Remember when I tried to give bone marrow cells and they said I was disqualified because I was on disability. I wrote about how angry I was and how I am so tired of stigma. Well, turns out…I couldn’t let it go. It’s been a few weeks, but I have been spending time thinking about shame, guilt, and accountability. So, I decided to write and mail this letter. I know that no one will read it, no one will respond, and no one will care. But I wrote it anyway. Because I care. I share it with you because I hope that you care, too.
Also, if you are not on disability, and do not take Lithium, are not diabetic, have HIV/AIDS, (and there might be a few others,) please register to be a bone marrow donor now at BeTheMatch.org. As I say in the letter below: They may take away my right to give, but at least I can help those patients who are dying by getting others to give. Patients shouldn’t suffer because of arcane policy decisions.
To Whom It May Concern:
It has taken me a few weeks to decide to write this letter. I suppose I was trying to evaluate my personal shame and the errors of your organization. However, I think it is important for you to know what happened, why it was hurtful to me and your organization, and what remedies you might consider.
My father lost his arm when I was nine years old. When I was 15 and legally able, I began to donate blood on a regular basis. When I found out I had a high platelet count, I started apheresis. In 2010, at the age of 28, I added myself to the “Be the Match” registry.
Since I was nine years old, I have suffered from depression. In 2010, when I signed up, I was working, but a mess. Just a year later, I had to quit and move back home because I was so ill. However, in the past year and a half, I have found proper medication for my illness. I have a support team of specialists and I work hard every day to make my life better. I am, for the first time since I can remember, in a strong, happy place and while I am not ready to go back to work quite yet, I am ready to start helping others.
A few weeks ago, I received an email informing me that I might possibly be a match! I went online and watched the videos. I filled out my questionnaire immediately. It should be noted that nowhere on the questionnaire did it say what medications would disqualify me, nor did it ask if I was on disability.
I decided to call the hotline to ask why you doing more PBSC now. While on the phone, the woman was polite and friendly. She suggested we review the questionnaire while I was on the phone to save time. When she asked me about my medications, I told her that two were for my depression. Well, to be specific, I unfortunately told her it was for bipolar II which very few people know of and often associate with bipolar I, which is incredibly different. In simple terms, I have depression but need different types of drugs to impact my brain chemistry. Her tone changed: “Well you can’t give if you take Lithium.” She was looking at my questionnaire, with my list of medications, but still felt the need when she heard I had a mental illness to throw out Lithium. At this point, she became quiet and terse as we continued to review my questionnaire.
This made me incredibly nervous which made me feel the need to validate myself. I told her that I was doing really well, and the best part was, I didn’t work, so I could be there anywhere at anytime! She asked me if I was unemployed and living with my parents or if I was on disability. I told her that I had finally moved out since I was doing better, but had started to receive short-term medical disability for the past two years to help compensate until I could work.
It was at this point she informed me that because I was on disability, I was unable to give. I told her that if it had to do with liability, I would be happy to sign a document declaring I would not sue. I would also have my psychiatrist agree to monitor me or write a note attesting that I was healthy enough to deal with the side effects that I know the shots can give. It wasn’t that I was depressed, though she made it quite clear she was not happy about that. It was because I get a small amount of money from the government every year. When I signed up in 2010, if I had given, I would be more concerned about my mental state than I am now. And yet, because I was working, I would have been able to give? If I was just laying around at my parents’ house, living off of their food and money, I could even give, but because I was trying to be more independent, I was being penalized.
She told me she would “do me a favor” and not take me out of the system completely but rather declare me “invalid” until I called back and told them I was off disability. Now I know there is a stigma in society, and clearly this woman was uneducated but her actions made me feel tainted.
What has been bothering me since is that nowhere in the documents I received did it tell me that if I was on disability, I would be unable to give. You don’t even have a section on the questionnaire that says: “If you take the following medications, please call as you may be unable to give.” You have a question about diabetes – if disability is such a problem, why was it not on there?
I hope you can understand how excited I was to possibly save someone’s life. My friend died a few years ago of Hodgkin’s because she couldn’t find a donor in time. I had already written all of my family and friends telling them that while there was still a slim chance, I had actually been called up! I then had to write them and tell them that because I get government subsidies, I am useless to the program.
The thought that kept going through my head is that if I was actually a match and you told the donor I had a mental illness (that did not impact my cells) and that I was on disability, there is no doubt in my mind they would ever say no to my cells! For an organization that understands how difficult it is to find a match, something this inconsequential is letting people die.
If there are legal reasons, there should be information on the website. And I should be able to talk with someone about it. I am so disappointed in you as an organization. I wrote a blog post about this, and told my family and friends. But I want you to know that I also told them I still thought if they could, they should sign up. You may take away my right to give, but at least I can help those patients who are dying by getting others to give. Patients shouldn’t suffer because of your arcane policy decisions.
I am no longer ashamed of myself. I stand true to my values of helping others. I will continue to give blood and platelets and encourage others to sign up on the registry. But I am ashamed of your organization, and I hope by sharing this story, you are ashamed of yourselves as well. I ask you not to apologize, but to please do something about this. If you don’t want us to give, then make it clear. If there are medications we cannot take, let us know. And make sure you have educated nurses on the phone for the questionnaire who know better than to judge someone on the phone for an illness they did not ask for, who is only trying to help.
We need organizations like yours, but you need to step up. It is 2016, and people are dying who could possibly live. It is your responsibility to make sure that anyone that can give, should be able. I hope you give this time and thought. I know I have.