Hello, friends! New to the Mylyfe Blog, I am excited to share my experience and knowledge. My name is Max and I have been making the rounds in our community quite a bit lately, so thank you for your gracious attention as the ‘new kid in town’ thus far. The title of this article comes from a song I released in late August called Dear Anxious, which is a reflection of my return to the bleeding disorder community (I‘ll call it BDC). This is the first article I have written for the BDC at large since coalescing my platform as it is, and “Share Your World” is a pretty succinct way to describe that platform, so I figured it would be a good idea to give anyone that is curious about me the condensed edition of “Who is this strange man and what’s wrong with him?” 🙂
Well, I’m glad you asked because I clearly have a lot to say on the matter! My name is Maxwell DeSimone Feinstein, I am a musician and performer of over 20 years, and I’m freshly 33 years old at the time of writing this.
I was diagnosed with mild hemophilia A during my childhood despite bleeding as I did. That changed when I turned 17 and I was diagnosed with moderate hemophilia (with a tendency to bleed like someone with severe hemophilia), and I had significant damage to my right ankle and elbow. It’s funny how that works, isn’t it? I have all the trimmings of severe hemophilia but am considered ‘clinically severe moderate’ according to charts.
I’m a lot like the other members of our lovely community because I am a product of the BDC and in that, I feel that, like hemophilia, it has its virtues and flaws. In the BDC, from an early age, we are encouraged to share our stories, and I have made a reputation for myself as someone who attempts to speak on difficult matters in new ways. The matter I would like to reflect on is that of community burnout, and the story is ultimately that of a prodigal son.
My mother, like many mothers in our community, was heavily involved in advocacy, leadership, and large-scale organizational development. As a result of her work, as a child, I was along for all the dinners she had to attend, all the
traveling she had to do and was present for the highly confusing politics regarding the different organizations. Being part of the community can be a whirlwind. If you are an active part of it, you know exactly what I mean. Being active in this community is a lot and then there’s managing the condition. This was a lot for me as a child and can be a lot for any child (or adult). There is an intensity, a feeling of constant motion, and when your emotions dip it becomes a feeling of forever being under a microscope and that makes you opt-out of the world around you.
As far as I’ve seen, there hasn’t been a discussion around the challenges we face when we are an affected person as well as someone who does the work for their community, in my case, the BDC that has given the subject the proper respect it deserves. I feel it’s important that we bring this to the foreground. I love the bleeding disorders community, but there is certainly a lot more to unpack than may meet the eye.
This is why I share my perspective and why I want to encourage others to do the same. I’ve returned to advocacy work, the work I left because I was a burnt-out child and I am fortunate for this return. I am now able to look outward to the public and inward to my community. Now, when I post and write, I get messages and comments from people who feel heard. We connect, and in those moments, future community seeds are planted. One that, by sharing my story, in some way grow and thrive. If you or someone you know is a jaded patient feeling overwhelmed and at the end of their rope if you are in pain and feel misunderstood by even those you are closest to we want to hear from you so we can share our stories. So we can ensure you never feel alone and burnt out, and so our community can sustain. We want to hear you.
Your world is your mind, your world is your body, your world is the influence you have on that which exists around you and perhaps through reflecting together we can endeavor to make that a positive influence. Share your world and watch it grow.
The views and opinions expressed here are those of the author, an independent blogger, and do not necessarily reflect the views and opinions of Mylyfe Specialty Pharmacy.
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