It’s Complicated! Comorbidities and Hidradenitis Suppurativa

I lead an incredibly complex life for someone who is a stay-at-home patient. I’m not a mom of children nor of fur babies. 'My medical conditions are my children' is how I explain it to those who don’t know me.

Taking care of medical conditions that are not always well known, that are painful, and that are high maintenance in general can be all-consuming at times for those of us who have multiple comorbidities.

I have to coordinate everything

First, there are a lot of assignments involved with having more than one complex disease like hidradenitis suppurativa. For instance, I happen to have 10 rare diseases diagnosed, as well as HS, and other non-rare diseases. I have expectations when I see my doctors, and they have expectations for me.

Often they involve lab tests, scans, weighing, stripping, dressing, breathing, looking, blinking, walking, and remembering. But mostly, it involves me calling everyone. I am the coordinator. None of it happens if something is dropped from the chain of whatever is supposed to happen. So even though I’m the patient and I’m supposed to be busy being sick, I also have to coordinate everything.

There is a lot of research involved

Second, there’s a lot of research. Yes, I know I’m not a doctor. I’m also not a physician’s assistant, a nurse practitioner, a physical therapist, a psychiatrist, or any kind of medical practitioner. But boy howdy, I can read a medical journal article or 17. And sometimes I find links between how these diseases are related, or how medications are effective between diseases. And then I talk to my doctors. Sometimes I talk to ALL my doctors.

I don’t actually always remember how many doctors I have on my team, because sometimes the number is fluctuating depending on if I’m auditioning someone new.

I'm always looking for new and better doctors

Third, I am always looking for new doctors. I admit it, I want to know who is out there. Who can serve me best? That isn’t to say that I’m not grateful for some who are on my team already. I have kept both my gastroenterologist and my OB/GYN since 2007. But I pay attention to who is out there, because staying with the same doctors, whether I’ve seen them for 3 visits or 30 visits, might be preventing me from getting the best care possible.

Sometimes I hear from fellow patients that they have been getting the same treatments for decades and they are miserable because they are in incredible pain and the treatments truly aren’t adding anything to their quality of life, but they haven’t thought to look for another doctor or treatment. That truly breaks my heart.

I have to advocate for myself

Fourth, sometimes I firmly fight for my rights as a patient, reminiscent of a mama bear. For instance, right now I’m taking a biologic that has had a huge impact on two of my conditions. It’s not prescribed for hidradenitis suppurativa, but it has cleared up all but about 5 pencil eraser-sized lesions, and I can’t even begin to explain how thrilled I am, as I used to be stage II.

This biologic also treats ankylosing spondylitis, which for me is advanced to the point where my hands and feet are severely affected and I can’t use them. I typed this article, right? So this medication has made a big impact on my conditions. But my doctor was pushing me for two visits to try another medication, which was another biologic that just became available on the market, because he wanted to see what it would do. The thing is, it was very closely related to another medication that had already failed me in a major way. In fact, I am currently on my last resort medication. I told him no. I told him no again. And I told him no, no, NO, STOP ASKING ME. There is no way I want to be in excruciating pain where I need to be on a painkiller schedule. C’mon! He finally backed off... and then passed me on to his nurse practitioner.

Having chronic health conditions is expensive

Fifth and not the last by any means, it is so darn expensive being a complex medical case. I always have to shuffle around what I’m going to spend money on. I might want to finally be able to afford treatment on one condition, but then I have a sort of crisis come up that I have to deal with instead, and I have to put treatment off.

For instance, besides the daily biologic doses I take, I also was getting yearly treatments of two different kinds of lasers for my hidradenitis suppurativa. Unfortunately we had the pandemic take over the world for two years, so I put off the treatments. But then I had to get both of my feet operated on, then tumors removed, then my hand operated on. Now I have to sort of wait to see if I’m going to get another hand surgery, or shoulder surgery, or brain surgery. Or maybe I’m going to get a root canal and crown, because that is absolutely happening in the next week or two. And I really need to get compression leggings to cover three of my other rare conditions. But see the above. And if I stop taking any of my medications, I’m in trouble. I already sacrificed two because of price – and believe me, they are ALL important.

My body needs time to repair

So all of this leads to understanding that when I rest, it's not because I'm lazy, or doing "nothing." My body is repairing and getting ready for the next round of, well, whatever. Sometimes it's hard to get out of my head and stop thinking of my internal list of what I need to be doing or think I should be doing in order to please others or get stuff done, but in reality I'm doing exactly what I should be doing, which is letting myself recover.

So, to all of my fellow HS warriors out there, remember to be kind to yourselves. You're doing the best you can with what you've got.