1 00:00:00,880 --> 00:00:02,480 They did an assessment. They said, well, you're 2 00:00:02,480 --> 00:00:04,160 kinda you're a few points under depressed, so 3 00:00:04,160 --> 00:00:05,679 you're not depressed. And then that was kinda 4 00:00:05,679 --> 00:00:06,559 the end of it. They were like, well, 5 00:00:06,559 --> 00:00:08,000 if you need some more help, you should 6 00:00:08,000 --> 00:00:10,000 reach out. But I remember thinking, like, something 7 00:00:10,000 --> 00:00:11,519 is still wrong. I need help. And and 8 00:00:11,519 --> 00:00:12,960 so, like, it doesn't have to have a 9 00:00:12,960 --> 00:00:14,419 name, but I still need support. 10 00:00:15,414 --> 00:00:17,975 Welcome to Boundless Bee, the Hemophilia Bee podcast. 11 00:00:17,975 --> 00:00:20,054 The podcast standing with you from a family 12 00:00:20,054 --> 00:00:22,475 like yours, presented by the Coalition for Hemophilia 13 00:00:22,695 --> 00:00:25,195 Bee in partnership with Balancing Life's Issues. 14 00:00:25,894 --> 00:00:27,829 We often talk about the the physical side 15 00:00:27,829 --> 00:00:30,230 of bleeding disorders, but today we're focusing on 16 00:00:30,230 --> 00:00:33,210 the mental and emotional journey, grief, the questions, 17 00:00:33,270 --> 00:00:35,909 the courage, and the importance of being seen 18 00:00:35,909 --> 00:00:37,990 and supported. And to help us do that, 19 00:00:37,990 --> 00:00:40,710 we have asked doctor Mosey Williams, licensed clinical 20 00:00:40,710 --> 00:00:42,170 social worker at UCSF's 21 00:00:42,625 --> 00:00:46,304 adult hemophilia treatment center, longtime advocate, speaker, and 22 00:00:46,304 --> 00:00:48,064 community leader to join us today. Welcome to 23 00:00:48,064 --> 00:00:50,784 the podcast, doctor Mosse. Hey. Thanks, Kai. Yeah. 24 00:00:50,784 --> 00:00:52,225 It's wonderful to have you. Start with a 25 00:00:52,225 --> 00:00:53,844 little bit of your background with hemophilia. 26 00:00:54,704 --> 00:00:56,304 Just let our listeners know what your background 27 00:00:56,304 --> 00:00:57,045 there is. 28 00:00:57,719 --> 00:01:01,079 Sure. So I have, severe hemophilia a. Was 29 00:01:01,079 --> 00:01:03,420 diagnosed shortly after birth, had a hematoma, 30 00:01:03,719 --> 00:01:04,700 and found out 31 00:01:05,159 --> 00:01:08,359 then, that I had hemophilia. And so first 32 00:01:08,359 --> 00:01:10,519 one in my family, first child of my 33 00:01:10,519 --> 00:01:11,340 mom that 34 00:01:11,645 --> 00:01:13,825 we knew about. My mom was a carrier 35 00:01:13,885 --> 00:01:16,365 is a carrier. So I'm 48 years old. 36 00:01:16,365 --> 00:01:18,865 So treatment at that time, this late seventies, 37 00:01:19,084 --> 00:01:19,584 cryoprecipitate, 38 00:01:20,365 --> 00:01:23,825 so kinda born during the the HIV AIDS 39 00:01:24,125 --> 00:01:24,625 hepatitis 40 00:01:25,005 --> 00:01:26,545 epidemic. And so 41 00:01:27,799 --> 00:01:30,040 it was just it was a scary time 42 00:01:30,040 --> 00:01:33,000 for our community. I contracted hepatitis c through 43 00:01:33,000 --> 00:01:35,260 treatment. I did not contract HIV. 44 00:01:35,959 --> 00:01:38,280 But due to that time, there were periods 45 00:01:38,280 --> 00:01:39,980 where we would not take 46 00:01:40,645 --> 00:01:42,885 replacement treatment because of the fear of that. 47 00:01:42,885 --> 00:01:43,704 So I remember 48 00:01:44,084 --> 00:01:45,704 being young and having a bleed 49 00:01:46,405 --> 00:01:48,505 and not having any factor and just 50 00:01:48,885 --> 00:01:50,965 being I remember my mom just telling me, 51 00:01:50,965 --> 00:01:52,739 lay down and just think of, 52 00:01:53,219 --> 00:01:55,959 visualize being in a cold room with ice 53 00:01:56,819 --> 00:01:59,780 and trying to, like, calm myself down because 54 00:01:59,780 --> 00:02:01,459 of the fear of using the treatments at 55 00:02:01,459 --> 00:02:02,840 the time. And so 56 00:02:04,019 --> 00:02:05,239 to go from that 57 00:02:05,905 --> 00:02:08,145 and then where treatments became more safe, and 58 00:02:08,145 --> 00:02:09,685 then I developed an inhibitor, 59 00:02:10,705 --> 00:02:13,685 which basically means the body fighting off 60 00:02:14,145 --> 00:02:16,405 the factor treatment or the treatment for hemophilia 61 00:02:16,625 --> 00:02:19,604 a, developing antibodies to that treatment. And so 62 00:02:19,980 --> 00:02:20,719 as a result, 63 00:02:21,260 --> 00:02:22,480 I ended up taking 64 00:02:23,099 --> 00:02:23,599 factor 65 00:02:24,379 --> 00:02:27,180 nine products or hemophilia b products. They didn't 66 00:02:27,180 --> 00:02:28,480 have bypassing agents 67 00:02:28,860 --> 00:02:30,219 at that time the way that they do 68 00:02:30,219 --> 00:02:31,040 it currently. 69 00:02:31,580 --> 00:02:34,139 And so that was my first exposure to 70 00:02:34,139 --> 00:02:37,155 what hemophilia b was. And so these times 71 00:02:37,155 --> 00:02:39,254 of uncertainty so it's like one thing. Okay. 72 00:02:39,314 --> 00:02:41,235 Mhmm. Don't know what treatment's gonna work. And 73 00:02:41,235 --> 00:02:42,675 that works, and all of a sudden, that's 74 00:02:42,675 --> 00:02:44,594 not working. And then I have hep c, 75 00:02:44,594 --> 00:02:46,194 and then then this treatment's not working. So 76 00:02:46,194 --> 00:02:48,835 continually trying to find different things and finally 77 00:02:48,835 --> 00:02:49,974 was able to tolerize, 78 00:02:50,560 --> 00:02:52,879 meaning you find a a certain amount of 79 00:02:52,879 --> 00:02:55,039 factor eight or he for hemophilia a that 80 00:02:55,039 --> 00:02:56,560 I could use that my body would not 81 00:02:56,560 --> 00:02:59,139 reject. And that was at around age 20. 82 00:02:59,599 --> 00:03:01,280 Wow. So a lot of up and down 83 00:03:01,280 --> 00:03:02,419 before that time. 84 00:03:02,799 --> 00:03:03,539 And so 85 00:03:04,085 --> 00:03:06,245 I can remember just being frustrated in and 86 00:03:06,245 --> 00:03:08,105 out of the hospital and, honestly, 87 00:03:08,724 --> 00:03:10,245 you know, kind of tired of it, not 88 00:03:10,245 --> 00:03:11,944 really wanting to deal with it anymore. 89 00:03:12,405 --> 00:03:14,264 And so I think from that 90 00:03:14,564 --> 00:03:18,289 and having supportive people, supportive mentors, and medical 91 00:03:18,289 --> 00:03:20,530 team, medical staff is what made me want 92 00:03:20,530 --> 00:03:22,849 to go into being a hemophilia social worker 93 00:03:22,849 --> 00:03:23,349 myself. 94 00:03:23,810 --> 00:03:25,489 Yeah. Wow. I mean, thank you for sharing. 95 00:03:25,489 --> 00:03:27,569 I know that is gonna be very familiar 96 00:03:27,569 --> 00:03:29,169 to a lot of people, especially the the 97 00:03:29,169 --> 00:03:31,335 emotional struggles. So can you talk to us 98 00:03:31,335 --> 00:03:33,275 a little bit because this is your expertise, 99 00:03:33,335 --> 00:03:36,615 like, this emotional journey that hemophilia patients kinda 100 00:03:36,615 --> 00:03:38,375 go on. And can you take us back, 101 00:03:38,375 --> 00:03:39,814 like, you know, what's that like as a 102 00:03:39,814 --> 00:03:41,335 kid, right, when your mom's telling you to 103 00:03:41,335 --> 00:03:43,014 lay lay still and and act like you're 104 00:03:43,014 --> 00:03:43,915 in an ice bath, 105 00:03:44,349 --> 00:03:47,889 to, like, the struggles in early adulthood to 106 00:03:47,949 --> 00:03:48,930 what seemed like 107 00:03:49,389 --> 00:03:51,229 not great news time and time again. Right? 108 00:03:51,229 --> 00:03:52,830 Can you talk to us about what that 109 00:03:52,830 --> 00:03:54,590 does to us as young people and how 110 00:03:54,590 --> 00:03:56,530 we kind of, like, hold on to that 111 00:03:56,669 --> 00:03:57,794 in our adult lives? 112 00:03:58,275 --> 00:03:58,754 Yes. 113 00:03:59,555 --> 00:04:01,794 I remember having bleeds and then not being 114 00:04:01,794 --> 00:04:02,694 able to walk 115 00:04:03,074 --> 00:04:04,514 and then not wanting to go to school 116 00:04:04,514 --> 00:04:05,875 because I didn't wanna use crutches and I 117 00:04:05,875 --> 00:04:07,715 didn't wanna be seen different because I had 118 00:04:07,715 --> 00:04:10,354 gone before people you know, kids, so, you 119 00:04:10,354 --> 00:04:11,334 know, they don't understand 120 00:04:11,715 --> 00:04:13,719 differences sometimes and they'll make fun of you. 121 00:04:13,719 --> 00:04:15,319 So I didn't wanna go. And it got 122 00:04:15,319 --> 00:04:17,480 to a point where my parents, mom and 123 00:04:17,480 --> 00:04:18,839 dad said, well, you have to go to 124 00:04:18,839 --> 00:04:21,420 school because you can't keep missing school. Because, 125 00:04:21,560 --> 00:04:23,000 you know, you can have crutches. You can 126 00:04:23,000 --> 00:04:24,920 go. You can actually be there. It's just 127 00:04:24,920 --> 00:04:27,240 the shame and the fear of going. Mhmm. 128 00:04:27,240 --> 00:04:27,980 And so 129 00:04:28,334 --> 00:04:29,935 through those kind of times, I eventually did 130 00:04:29,935 --> 00:04:30,814 go back to school. 131 00:04:31,295 --> 00:04:33,535 I lost confidence. My esteem was low because 132 00:04:33,535 --> 00:04:34,754 I just felt like 133 00:04:35,295 --> 00:04:36,754 I felt like an outsider. 134 00:04:37,214 --> 00:04:39,875 Mhmm. I wasn't able to participate in activities. 135 00:04:40,095 --> 00:04:42,420 Sports I loved growing up, but I always 136 00:04:42,420 --> 00:04:44,420 was having bleeds, so I wasn't able to 137 00:04:44,420 --> 00:04:46,199 participate as I woulda wanted to. 138 00:04:46,660 --> 00:04:47,480 And so 139 00:04:48,100 --> 00:04:50,259 going into college, and then I had a 140 00:04:50,259 --> 00:04:51,939 really when I started to have more serious 141 00:04:51,939 --> 00:04:53,000 bleeds, I really 142 00:04:53,620 --> 00:04:54,600 became depressed. 143 00:04:54,955 --> 00:04:56,955 And, I remember I had a job just 144 00:04:56,955 --> 00:04:59,435 working at the dean's office, and they they 145 00:04:59,435 --> 00:05:00,955 said, well, you know, you probably should talk 146 00:05:00,955 --> 00:05:01,615 to somebody. 147 00:05:01,995 --> 00:05:04,154 Mhmm. You probably should go to the counseling 148 00:05:04,154 --> 00:05:05,595 center. And that was the first time I 149 00:05:05,595 --> 00:05:06,735 went to counseling. 150 00:05:07,835 --> 00:05:08,975 And I went, 151 00:05:09,879 --> 00:05:11,480 and I found it helpful. And and this 152 00:05:11,480 --> 00:05:13,180 kinda plays into the rest of, 153 00:05:13,879 --> 00:05:15,800 the story is that they they did an 154 00:05:15,800 --> 00:05:17,319 assessment. They said, well, you're kinda you're a 155 00:05:17,319 --> 00:05:19,339 few points under depressed, so you're not depressed. 156 00:05:19,560 --> 00:05:20,759 And then that was kinda the end of 157 00:05:20,759 --> 00:05:21,720 it. They were like, well, if you need 158 00:05:21,720 --> 00:05:23,295 some more help in the future, reach out. 159 00:05:23,375 --> 00:05:25,134 But I remember thinking, like, something is still 160 00:05:25,134 --> 00:05:27,055 wrong. Yeah. I need I need help. Right. 161 00:05:27,055 --> 00:05:28,495 I need help. And and so, like, it 162 00:05:28,495 --> 00:05:29,855 doesn't have to have a name, but I 163 00:05:29,855 --> 00:05:31,935 still need support. Right. And and and so 164 00:05:31,935 --> 00:05:33,615 that was something that kind of later in 165 00:05:33,615 --> 00:05:35,215 life in terms of my own journey and 166 00:05:35,215 --> 00:05:36,850 then trying to help others. Like, we don't 167 00:05:36,850 --> 00:05:38,050 have to have a name for this, but 168 00:05:38,050 --> 00:05:39,970 what kind of support can we give and 169 00:05:39,970 --> 00:05:41,490 when we look forward to to get some 170 00:05:41,490 --> 00:05:41,990 help? 171 00:05:42,370 --> 00:05:44,209 Right. So you're you're saying that that moment 172 00:05:44,209 --> 00:05:46,129 for you is kind of when you made 173 00:05:46,129 --> 00:05:48,954 that decision to get into, like, more of 174 00:05:48,954 --> 00:05:50,714 the social work side of things because you 175 00:05:50,714 --> 00:05:51,914 knew there are people out there who need 176 00:05:51,914 --> 00:05:54,654 help who aren't maybe necessarily, like, clinically 177 00:05:55,435 --> 00:05:57,754 depressed or, like Right. Right. Defined by those 178 00:05:57,754 --> 00:05:59,675 terms. Right. Or defined by those terms. Or 179 00:05:59,675 --> 00:06:01,354 if it's if the, you know, clinicians we 180 00:06:01,354 --> 00:06:03,420 all we make mistakes or they missed it. 181 00:06:03,500 --> 00:06:04,860 It just didn't show up on that because 182 00:06:04,860 --> 00:06:06,480 sometimes people will, 183 00:06:07,100 --> 00:06:09,259 will minimize symptoms. And so, therefore, you know, 184 00:06:09,259 --> 00:06:11,340 some things won't won't register. And so all 185 00:06:11,340 --> 00:06:13,279 of that. All of that. Gotcha. 186 00:06:13,660 --> 00:06:16,060 So, you know, I think when it comes 187 00:06:16,060 --> 00:06:17,520 to, like, the physical 188 00:06:17,995 --> 00:06:20,254 versus the kind of emotional, mental 189 00:06:20,634 --> 00:06:22,175 piece of navigating hemophilia, 190 00:06:23,274 --> 00:06:26,314 like, what are what are some basic tools 191 00:06:26,314 --> 00:06:29,055 or practices that, you know, the our community, 192 00:06:29,194 --> 00:06:30,014 those listening, 193 00:06:30,370 --> 00:06:33,089 can maybe practice daily, in in a way 194 00:06:33,089 --> 00:06:35,729 to better help better support their emotional emotional 195 00:06:36,209 --> 00:06:38,069 I feel like one is connection, 196 00:06:38,529 --> 00:06:40,930 and I think sometimes when things happen to 197 00:06:40,930 --> 00:06:42,149 us, we tend to isolate. 198 00:06:42,785 --> 00:06:44,545 You know, we may step back from others 199 00:06:44,545 --> 00:06:47,285 because we're ashamed or afraid or embarrassed, 200 00:06:47,665 --> 00:06:49,425 don't wanna be judged, or or whatever it 201 00:06:49,425 --> 00:06:52,725 may be. But we have a strong oblivious 202 00:06:52,785 --> 00:06:53,524 source community 203 00:06:53,824 --> 00:06:55,365 of people who have been through 204 00:06:55,930 --> 00:06:57,849 not necessarily the exact same thing, but similar 205 00:06:57,849 --> 00:06:59,870 things and can relate and are looking 206 00:07:00,329 --> 00:07:02,250 to support others, to be a mentor to 207 00:07:02,250 --> 00:07:05,949 others, a a unk, aunt to auntie, father, 208 00:07:06,329 --> 00:07:08,490 brother, cousin. They're looking to support others, and 209 00:07:08,490 --> 00:07:09,709 they're looking for support. 210 00:07:10,375 --> 00:07:11,894 And so there is something that you can 211 00:07:11,894 --> 00:07:13,414 give in that way. I would say reaching 212 00:07:13,414 --> 00:07:16,055 into community, community events. A tough one that's 213 00:07:16,055 --> 00:07:18,794 kind of a two sided is gratitude because 214 00:07:19,175 --> 00:07:20,154 the same time, 215 00:07:20,774 --> 00:07:22,854 you know, we're angry at what has happened 216 00:07:22,854 --> 00:07:23,550 to us. 217 00:07:24,269 --> 00:07:26,750 Hard to be grateful sometimes. Right. Right. But 218 00:07:26,750 --> 00:07:28,909 even in that, it's like, you know, I 219 00:07:28,909 --> 00:07:31,389 have I'm still here. I have today. There 220 00:07:31,389 --> 00:07:33,169 are certain things that I can do 221 00:07:34,189 --> 00:07:34,689 that 222 00:07:35,149 --> 00:07:36,529 other people are unable. 223 00:07:37,165 --> 00:07:38,444 And I remember when I first had a 224 00:07:38,444 --> 00:07:40,865 hip replacement, and I was in a senior's 225 00:07:40,925 --> 00:07:43,185 water class trying to, you know, do rehab. 226 00:07:43,405 --> 00:07:44,685 And I'm the only I was at the 227 00:07:44,685 --> 00:07:47,165 time, I think I was 30, I think, 228 00:07:47,165 --> 00:07:48,225 or late twenties. 229 00:07:48,525 --> 00:07:50,045 And I remember there was a senior in 230 00:07:50,045 --> 00:07:51,345 the class, and he said 231 00:07:51,770 --> 00:07:53,050 he said to me, he said, I'm a 232 00:07:53,050 --> 00:07:54,569 millionaire. He said, and I'd give it all 233 00:07:54,569 --> 00:07:55,710 to be where you are. 234 00:07:56,090 --> 00:07:58,250 Mhmm. You know? And I just hadn't thought 235 00:07:58,250 --> 00:08:00,009 about it in that way, and I'm here 236 00:08:00,009 --> 00:08:01,550 I am coming off of a replacement. 237 00:08:01,930 --> 00:08:04,250 And just so the perspective perspective is is 238 00:08:04,250 --> 00:08:04,889 something that 239 00:08:05,605 --> 00:08:06,964 it may take some time to get there 240 00:08:06,964 --> 00:08:08,725 in terms of gratitude, but there are some 241 00:08:08,725 --> 00:08:09,225 things 242 00:08:09,605 --> 00:08:11,444 that we do have that we may take 243 00:08:11,444 --> 00:08:13,384 for granted just in in all of the 244 00:08:13,685 --> 00:08:15,764 other the challenges that we deal with. I 245 00:08:15,764 --> 00:08:18,264 know a big piece of what, this community 246 00:08:18,324 --> 00:08:21,180 kinda navigates is is grief, right, and and 247 00:08:21,180 --> 00:08:23,680 loss of loved ones and loss of 248 00:08:23,980 --> 00:08:26,139 somebody maybe I saw at a meeting last 249 00:08:26,139 --> 00:08:28,220 year, and they're not here anymore. So I 250 00:08:28,220 --> 00:08:30,300 know you have a personal story around loss 251 00:08:30,300 --> 00:08:32,879 and grief, and that really deepened your commitment 252 00:08:33,125 --> 00:08:35,284 to this emotional piece of advocacy. Can you 253 00:08:35,284 --> 00:08:36,584 can you talk to us about that? 254 00:08:37,044 --> 00:08:39,684 Yes. I can remember growing up, and then 255 00:08:39,684 --> 00:08:40,164 we were at 256 00:08:40,884 --> 00:08:42,164 we would go to camp each year. And 257 00:08:42,164 --> 00:08:44,404 then when the HIV, AIDS epidemic happened, all 258 00:08:44,404 --> 00:08:45,764 of a sudden, every year, we would do 259 00:08:45,764 --> 00:08:47,365 do our annual visit with our social worker, 260 00:08:47,365 --> 00:08:48,779 me and my brother. I have a two 261 00:08:48,779 --> 00:08:50,860 brothers with hemophilia. And, we would go and 262 00:08:50,860 --> 00:08:52,139 talk to social work and look at all 263 00:08:52,139 --> 00:08:54,059 the pictures from camp and say, how's they're 264 00:08:54,059 --> 00:08:56,480 doing? How's this kid doing? And then, 265 00:08:56,940 --> 00:08:58,220 you know, they say, oh, they're doing this. 266 00:08:58,220 --> 00:08:59,839 And then all of a sudden, one year, 267 00:09:00,539 --> 00:09:02,299 they all the kids we asked about were 268 00:09:02,299 --> 00:09:04,535 no longer alive. They were gone. They had 269 00:09:04,535 --> 00:09:05,815 passed away. And I remember looking at my 270 00:09:05,815 --> 00:09:07,754 brother. We didn't really understand what was happening. 271 00:09:08,375 --> 00:09:09,995 And and so having 272 00:09:10,615 --> 00:09:13,195 that experience of losing people in our community 273 00:09:13,975 --> 00:09:14,634 is traumatic. 274 00:09:15,174 --> 00:09:16,879 I remember being in the hospital and my 275 00:09:16,879 --> 00:09:19,759 friends coming to visit me, and feeling like 276 00:09:20,000 --> 00:09:22,480 looking at me, having a tough time, and 277 00:09:22,480 --> 00:09:24,480 then feeling that they might be next. And 278 00:09:24,480 --> 00:09:26,100 so there's that fear and uncertainty. 279 00:09:27,039 --> 00:09:28,799 How I came to be connected to the 280 00:09:28,799 --> 00:09:31,475 hemophilia b community in a more formal way 281 00:09:31,475 --> 00:09:33,315 was we had at a point in our 282 00:09:33,315 --> 00:09:33,815 community, 283 00:09:34,274 --> 00:09:37,075 we had some blood brothers who had died 284 00:09:37,075 --> 00:09:39,654 by suicide, and I was asked to help 285 00:09:39,875 --> 00:09:42,034 navigate a conversation around that. So I I 286 00:09:42,034 --> 00:09:44,274 was able to just just hold a space 287 00:09:44,274 --> 00:09:46,259 for others to talk about, you know, when 288 00:09:46,259 --> 00:09:49,139 we have, you know, depressive symptoms and mood 289 00:09:49,139 --> 00:09:51,779 changes and diff different things and and think 290 00:09:51,779 --> 00:09:54,419 about, you know, maybe not being here anymore. 291 00:09:54,419 --> 00:09:55,539 What would it be like if I didn't 292 00:09:55,539 --> 00:09:57,620 have to go through this anymore? Mhmm. And 293 00:09:57,620 --> 00:10:00,225 just having a conversation about it because research 294 00:10:00,225 --> 00:10:01,825 tells us that talking about these things does 295 00:10:01,825 --> 00:10:04,164 not increase the likelihood of committing suicide. 296 00:10:04,865 --> 00:10:06,945 Right. But we're having thoughts, so we need 297 00:10:06,945 --> 00:10:10,144 to normalize that that it's okay to think 298 00:10:10,144 --> 00:10:11,504 about things because we don't know what to 299 00:10:11,504 --> 00:10:13,504 do as humans. We're trying to figure out 300 00:10:13,504 --> 00:10:14,190 how to cope, 301 00:10:14,590 --> 00:10:16,110 but what we do after that is the 302 00:10:16,110 --> 00:10:18,429 key. Yeah. And so, yeah, you you use 303 00:10:18,429 --> 00:10:20,610 the the the word normalization. Right? 304 00:10:20,990 --> 00:10:23,789 Creating forums and creating space for people to 305 00:10:23,789 --> 00:10:26,990 feel vulnerable and and ask ask questions and 306 00:10:26,990 --> 00:10:27,254 explain 307 00:10:28,215 --> 00:10:30,215 explain how they're feeling amongst community, amongst people 308 00:10:30,215 --> 00:10:32,294 who have shared experience. So but can we 309 00:10:32,294 --> 00:10:34,774 talk a little bit about creating that space 310 00:10:34,774 --> 00:10:37,414 for someone to say, I'm not okay? Can 311 00:10:37,414 --> 00:10:39,754 you, like Mhmm. Maybe walk somebody through 312 00:10:40,350 --> 00:10:42,110 if they're having that apprehension to be able 313 00:10:42,110 --> 00:10:43,809 to say those words out loud to somebody? 314 00:10:44,190 --> 00:10:45,970 Like, what what would you tell them? 315 00:10:47,230 --> 00:10:48,929 I would start with 316 00:10:50,190 --> 00:10:51,329 my own path, 317 00:10:51,629 --> 00:10:54,429 sharing my own story of being being there 318 00:10:54,429 --> 00:10:56,964 and having to to say that. And Mhmm. 319 00:10:57,205 --> 00:10:58,404 And I think a key is, 320 00:10:59,205 --> 00:10:59,705 identifying, 321 00:11:01,365 --> 00:11:04,024 safe people that you can share with. Right. 322 00:11:04,084 --> 00:11:06,485 You know, that may be able to handle 323 00:11:06,485 --> 00:11:09,589 something like that. Mhmm. I can remember 324 00:11:10,850 --> 00:11:11,350 going 325 00:11:12,370 --> 00:11:14,289 I was working in the ER and then 326 00:11:14,289 --> 00:11:16,529 had to witness children being taken away by 327 00:11:16,529 --> 00:11:18,690 child protective services. You know, there was some 328 00:11:18,690 --> 00:11:20,914 abuse in a home, and then the parent 329 00:11:20,914 --> 00:11:22,434 had to have the kids removed. They didn't 330 00:11:22,434 --> 00:11:23,955 know they're gonna be removed. The parent was 331 00:11:23,955 --> 00:11:26,034 still seven months pregnant with another child, and 332 00:11:26,034 --> 00:11:27,875 then it it was just a traumatic experience 333 00:11:27,875 --> 00:11:29,715 to witness. And I remember breaking down after 334 00:11:29,715 --> 00:11:31,235 that. Mhmm. And then I saw a friend 335 00:11:31,235 --> 00:11:32,514 later that day, and he was like, how 336 00:11:32,514 --> 00:11:34,455 are you doing? I was like, I'm struggling 337 00:11:34,595 --> 00:11:36,480 right now. Yeah. You know? And but this 338 00:11:36,480 --> 00:11:38,080 was somebody I could trust and talk to 339 00:11:38,080 --> 00:11:40,980 about that. And so in setting this conversation 340 00:11:42,000 --> 00:11:45,200 in a room talking about depression, talking about 341 00:11:45,200 --> 00:11:45,700 suicide, 342 00:11:46,160 --> 00:11:48,480 sharing my story, and then I as we 343 00:11:48,480 --> 00:11:49,460 are in the room, 344 00:11:50,225 --> 00:11:52,304 identifying that this is a safe space to 345 00:11:52,304 --> 00:11:54,625 talk about these things. Right. And so then 346 00:11:54,625 --> 00:11:57,024 everybody who's a part of this that chose 347 00:11:57,024 --> 00:11:58,404 to be a part of the discussion 348 00:11:58,784 --> 00:12:00,865 or the group or whatever whatever you 349 00:12:01,904 --> 00:12:03,264 they can look around the room and see, 350 00:12:03,264 --> 00:12:06,200 okay. This is somebody who who sees me, 351 00:12:06,339 --> 00:12:07,940 and I can share with this person, whether 352 00:12:07,940 --> 00:12:10,659 it's after this or during this session. Mhmm. 353 00:12:10,659 --> 00:12:12,179 And so that's part of it too. It's 354 00:12:12,179 --> 00:12:12,679 like, 355 00:12:13,299 --> 00:12:14,360 you know, normalizing. 356 00:12:14,820 --> 00:12:16,279 It's okay to feel 357 00:12:16,580 --> 00:12:19,799 overwhelmed. It's okay to be frustrated, angry, depressed. 358 00:12:20,214 --> 00:12:20,955 It's okay. 359 00:12:21,575 --> 00:12:22,794 It's a part of life. 360 00:12:23,495 --> 00:12:26,054 How do we respond to it is where 361 00:12:26,054 --> 00:12:28,855 the work happens. Yeah. So, you know, finding 362 00:12:28,855 --> 00:12:31,174 a loved one, a friend Mhmm. A community 363 00:12:31,174 --> 00:12:33,495 member, you know, hemophilia b. Right? There's so 364 00:12:33,495 --> 00:12:36,029 many opportunities for people in this community to 365 00:12:36,029 --> 00:12:38,210 to come together and engage in this conversation. 366 00:12:38,269 --> 00:12:40,110 But I think, you know, when it comes 367 00:12:40,110 --> 00:12:42,750 to, like, speaking to a clinician or getting 368 00:12:42,750 --> 00:12:44,990 mental health support, like, what are some warning 369 00:12:44,990 --> 00:12:45,490 signs 370 00:12:46,110 --> 00:12:47,870 that might mean I may I might need 371 00:12:47,870 --> 00:12:49,389 to take this a step further and and 372 00:12:49,389 --> 00:12:51,394 speak to a professional? I think and then 373 00:12:51,475 --> 00:12:52,674 and as you like, you know, when we 374 00:12:52,674 --> 00:12:55,075 think about clinicians, crisis lines are always available 375 00:12:55,075 --> 00:12:57,235 to listen as well. Right? You know, like 376 00:12:57,235 --> 00:12:58,115 988. 377 00:12:58,115 --> 00:12:59,174 You know, we have 378 00:12:59,715 --> 00:13:01,475 these outlets that that people that can handle 379 00:13:01,475 --> 00:13:03,415 it. Because sometimes our family members 380 00:13:03,769 --> 00:13:06,730 or friends can't handle hearing these things. I 381 00:13:06,730 --> 00:13:08,910 think one thing one side for 382 00:13:09,529 --> 00:13:12,429 people that may need additional support is if 383 00:13:13,450 --> 00:13:15,790 we find ourselves telling the same story 384 00:13:17,084 --> 00:13:17,904 to everyone. 385 00:13:18,684 --> 00:13:19,345 You know? 386 00:13:20,044 --> 00:13:21,884 And it seems like somebody might kinda be 387 00:13:21,884 --> 00:13:23,804 stuck in a certain place. Mhmm. You know? 388 00:13:23,804 --> 00:13:26,444 Because conversations may not be conversation that turns 389 00:13:26,444 --> 00:13:27,345 into, like, 390 00:13:27,804 --> 00:13:30,125 me sharing this that I've been through. Yeah. 391 00:13:30,125 --> 00:13:31,985 And then I'm not able to hear 392 00:13:32,409 --> 00:13:33,850 other parts of what other people are saying 393 00:13:33,850 --> 00:13:35,690 because I'm stuck at this place. And that's 394 00:13:35,690 --> 00:13:37,450 one sign I see. You know, in just 395 00:13:37,450 --> 00:13:38,809 in talking with people, working with people, that 396 00:13:38,809 --> 00:13:41,850 somebody might need additional support. If you hear, 397 00:13:41,850 --> 00:13:44,590 you know, a tone, of of hopelessness 398 00:13:44,970 --> 00:13:47,764 or or questioning, you know, kind of a 399 00:13:47,764 --> 00:13:50,504 existential question about about life, 400 00:13:51,204 --> 00:13:52,105 you know, wondering 401 00:13:52,565 --> 00:13:53,625 someone's value 402 00:13:54,245 --> 00:13:56,004 Mhmm. You know, what value they bring. Those 403 00:13:56,004 --> 00:13:58,245 are, you know, times when you hear that 404 00:13:58,245 --> 00:13:59,845 and you're think I I for me as 405 00:13:59,845 --> 00:14:01,259 a clinician thinking, okay. 406 00:14:01,980 --> 00:14:04,059 Let's look into more where where that's coming 407 00:14:04,059 --> 00:14:06,460 from. Is that because of something that recently 408 00:14:06,460 --> 00:14:06,960 happened? 409 00:14:07,340 --> 00:14:09,340 You know, they did did we lose someone, 410 00:14:09,340 --> 00:14:11,100 or is it has it been a long 411 00:14:11,100 --> 00:14:13,500 time that we felt like this? Mhmm. Now 412 00:14:13,500 --> 00:14:15,279 those are couple a couple things 413 00:14:15,934 --> 00:14:18,095 that I I would look for and I 414 00:14:18,095 --> 00:14:20,335 look to listen for in terms of seeing, 415 00:14:20,335 --> 00:14:21,934 you know, how someone's doing and if if 416 00:14:21,934 --> 00:14:24,975 additional support is needed. Yeah. Great. Well, you 417 00:14:24,975 --> 00:14:26,815 know, thank you so much for your time, 418 00:14:26,815 --> 00:14:28,679 and I know that you've you speak at 419 00:14:28,679 --> 00:14:31,080 all kinds of coalition events. So, you know, 420 00:14:31,080 --> 00:14:33,240 thank you again so much for for your 421 00:14:33,240 --> 00:14:34,920 energy there. And I think, you know, if 422 00:14:34,920 --> 00:14:36,600 we could wrap this up with, like, maybe 423 00:14:36,600 --> 00:14:38,679 one thing, you know, somebody can keep in 424 00:14:38,679 --> 00:14:40,679 mind that could support their own mental health 425 00:14:40,679 --> 00:14:42,440 or the mental health of a loved one, 426 00:14:42,440 --> 00:14:43,754 you know, what would that be? 427 00:14:45,035 --> 00:14:45,695 I think, 428 00:14:46,394 --> 00:14:48,654 like, we talked about normalizing these conversations. 429 00:14:49,115 --> 00:14:51,434 And part of it is it's okay to 430 00:14:51,434 --> 00:14:53,514 reach out and and and ask for support. 431 00:14:53,514 --> 00:14:55,914 I I think as people with bleeding disorders, 432 00:14:55,914 --> 00:14:57,514 we're used to doing that in terms of 433 00:14:57,514 --> 00:14:59,294 our physical care. And so 434 00:14:59,779 --> 00:15:02,820 we're used to getting support medically, getting things 435 00:15:02,820 --> 00:15:04,660 handled, and understanding. But I think it can 436 00:15:04,660 --> 00:15:06,420 be a scarier thing when it's something we're 437 00:15:06,420 --> 00:15:06,920 not 438 00:15:07,300 --> 00:15:09,620 used to. Like, wait a minute. I can't 439 00:15:09,779 --> 00:15:11,000 there is no factor, 440 00:15:11,300 --> 00:15:14,100 specifically, just generally speaking. Wait. I'm I'm feeling 441 00:15:14,100 --> 00:15:16,375 this way, and there isn't I don't know 442 00:15:16,375 --> 00:15:17,035 the path 443 00:15:17,815 --> 00:15:19,654 right off to fix this. I don't know 444 00:15:19,654 --> 00:15:21,654 how to deal with this. And so since 445 00:15:21,654 --> 00:15:23,014 we can't see it, there can be a 446 00:15:23,014 --> 00:15:25,095 tendency to, like, say, okay. I got this. 447 00:15:25,095 --> 00:15:26,375 I don't have to worry about it. I 448 00:15:26,375 --> 00:15:27,915 can I can handle this? 449 00:15:28,295 --> 00:15:28,795 But 450 00:15:29,960 --> 00:15:32,120 it's you know, the body is one unit. 451 00:15:32,120 --> 00:15:33,960 The brain and body are together, the mind 452 00:15:33,960 --> 00:15:35,559 body connection. We don't always see it that 453 00:15:35,559 --> 00:15:36,620 way, but they're connected. 454 00:15:36,920 --> 00:15:39,480 And then mood symptoms can impact, you know, 455 00:15:39,480 --> 00:15:39,980 pain, 456 00:15:40,440 --> 00:15:40,940 feelings, 457 00:15:41,320 --> 00:15:43,134 and those kind of things as well. And 458 00:15:43,134 --> 00:15:45,294 so I would just encourage somebody, you know, 459 00:15:45,294 --> 00:15:48,495 we all have challenging times, and there is 460 00:15:48,495 --> 00:15:49,794 a path for support 461 00:15:50,174 --> 00:15:51,475 and help and treatment 462 00:15:52,095 --> 00:15:54,014 with mental challenges just like there is with 463 00:15:54,014 --> 00:15:54,914 physical challenges. 464 00:15:55,534 --> 00:15:57,214 It looks different, but there is a path, 465 00:15:57,214 --> 00:15:58,754 and we can help you to get. 466 00:15:59,559 --> 00:16:01,959 Absolutely. Well, thank you again so much for 467 00:16:01,959 --> 00:16:04,679 for such an awesome conversation. And listeners, just 468 00:16:04,679 --> 00:16:06,279 a reminder that the 988 469 00:16:07,159 --> 00:16:10,279 hotline is available. Mental health professionals are available 470 00:16:10,279 --> 00:16:11,159 247, 471 00:16:11,159 --> 00:16:13,654 so you can call if you are feel 472 00:16:13,654 --> 00:16:15,254 like you need help or if a loved 473 00:16:15,254 --> 00:16:17,654 one needs help. And and also don't forget 474 00:16:17,654 --> 00:16:18,934 that you can go to hemo b dot 475 00:16:18,934 --> 00:16:21,815 org and events to find community events near 476 00:16:21,815 --> 00:16:24,134 you so that you can come together, have 477 00:16:24,134 --> 00:16:25,830 the shared experience, and 478 00:16:26,309 --> 00:16:28,549 share share your mental health journey with others 479 00:16:28,549 --> 00:16:30,950 who who know exactly what you're feeling. So 480 00:16:30,950 --> 00:16:32,870 this has been Boundless Bee, the Hemophilia Bee 481 00:16:32,870 --> 00:16:35,029 Podcast, the podcast standing with you from a 482 00:16:35,029 --> 00:16:37,029 family like yours presented by the Coalition for 483 00:16:37,029 --> 00:16:39,509 Hemophilia Bee and in partnership with Balancing Life's 484 00:16:39,509 --> 00:16:41,804 Issues. And doctor Mosse, thank you again for 485 00:16:44,284 --> 00:16:44,349 for being here today. Thanks. Thank you. Have 486 00:16:44,349 --> 00:16:46,125 a good day. Take care. Until next time, 487 00:16:46,125 --> 00:16:47,184 everybody. Take care. 488 00:16:54,924 --> 00:16:56,950 Thank you for listening to Boundless Bee, the 489 00:16:56,950 --> 00:16:59,909 Hemophilia Bee podcast. The podcast standing with you 490 00:16:59,909 --> 00:17:02,149 from a family like yours, presented by the 491 00:17:02,149 --> 00:17:04,789 Coalition for Hemophilia Bee and in partnership with 492 00:17:04,789 --> 00:17:07,829 Balancing Life's Issues. Produced by me, Kai. Got 493 00:17:07,829 --> 00:17:09,670 an idea for the show? Send us an 494 00:17:09,670 --> 00:17:11,984 email at podcast@hemob.org, 495 00:17:12,144 --> 00:17:13,904 and don't forget to stay connected to your 496 00:17:13,904 --> 00:17:16,464 community at hemo b dot org. Anything else 497 00:17:16,464 --> 00:17:17,285 to add, Miles?