The Top Five Reasons Being an Adult Patient with a Rare Childhood Disease Sucks

Or, why I get annoyed at our society not caring about medical care once we’re growed-ups

A note before this begins: I am friends with many parents of childhood patients with Systemic Juvenile Idiopathic Arthritis (SJIA). I appreciate their friendship, kindness, and guidance, especially as an adult patient who has had to figure out the medical world on her own. I wouldn’t trade my friendship with these amazing parents (or their kiddos!) for anything in the world. I am beyond pleased that SJIA is finally getting better treatment options as well as gaining more awareness, both in the general public and the medical communities. This piece is, simply, a way for me to express my discontent at the lack of consideration towards and inclusion of adult SJIA patients in the medical world and further. Many of us still struggle with the disease and need the newer treatments, education, and the like.

Growing up with chronic illnesses was definitely not my favorite thing, especially living in poverty with no access to healthcare. Nothing compares, though, to the isolation of being an adult with a rare childhood chronic illness. There are few resources for us past the college-age that don’t involve us having to extrapolate from experiences other have with similar but different illnesses. Resources currently exist for parents and families, thankfully, but still few for those of us in the middle of our lives.

The below are my top five peeves about being in such a position.

1. Resources

There is a significant lack of resources for us adults with SJIA. Outside of resources developed by groups focusing specifically on those currently in childhood, the information we SJIA patients get is often from groups who do not necessarily focus on SJIA. We are forced to turn to resources for those with Still’s Disease, regardless of whether it is the Adult Onset version or the juvenile onset version (which is SJIA).

No pharmaceutical companies openly aim to involve us in the development of materials for others or ask our opinions about issues. They still see it as a childhood issue, as if the damage done to us is acceptable and it’s not worth preventing more.

2. Funding/Medication Development

Medications being developed are either for children with SJIA OR on adults with other, related conditions like rheumatoid arthritis.

The lack of trial information on those of us in adulthood with SJIA means that I have no idea how my current medication may eventually affect my fertility. Parents of children affected by the disease don’t either. Seems to me that testing these drugs more often in adults may give us all peace of mind.

It would also, hopefully, lessen the number of physicians like my former rheumatologist who decided I could not go on one of the FDA-approved SJIA medications because it wasn’t tested in adults.

3. Groups

Parents have groups of other parents who all deal with SJIA. Adult-onset Still’s patients have the same. There are some groups that claim to offer refuge to all Still’s patients, whether afflicted by Adult Onset or SJIA. Unfortunately, there is far too much focus on the Adult Onset version in these groups from an education standpoint but also from those in the lead or having discussions. There winds up being stigma associated with being a juvenile onset patient.

There really is no place for those of us who are adults with juvenile onset SJIA. We wind up in general illness groups like those for people with rheumatic diseases like Rheumatoid Arthritis. There is a lot to be said for the sweet acceptance that we experience in these groups, and we do appreciate it, but it often isn’t the same. Medications (and their side effects), complications, and even non-medication treatments (ice vs heat) aren’t the same.

4. Friendships

When you have a rare disease, you often make friends with anyone you can suffering from the same malady. Unfortunately, that means my news feeds and timelines often wind up full of things I don’t look for in my friends.

As a social justice warrior, I know that I’m not perfect. I try to aim for being as intersectional and focus on helping everyone I can with my voice regardless of situation. Trying to keep in touch with others with the same illness, though, leads to me accepting the negative -isms that come along with these friendships.

The last thing I want to do is be friends with racists/homophobes/etc spouting hate against people I love and care about. It is, alas, a price I wind up paying to know others with the same illness.

And it makes me want to vomit.

5. Attention

Okay, it’s petty but no one cares about us as we age. They care about us as children but not as adults. It’s as if it’s somehow no longer tragic that we are ill — our bodies are already damaged goods and our quality of life is already skewed.

SJIA is, by no means, the only illness that these issues happen for. Websites string juvenile patients across their headers and in their stories as inspiration porn and forget about those of us who continue to suffer a lack of treatments, care, and involvement.

The involvement part particularly hurts. We know the ins and outs of these diseases in ways others don’t. We know ways to cope with these issues. We want to help pass that information on. Why are we not given the opportunity to do so on a wide scale?

I just want those of us who are adults to stop feeling excluded. We get it from all angles and, as we know, isolation like this can cause higher rates of depression and similar issues. Frankly, I’m tired of being pushed into that arena.

Kirsten is a writer and chronic illness activist living in Madison, Wisconsin. She is currently working towards her Master’s degree in Health Care Administration and Patient Advocacy.

This year, she is launching an organization called Chronic Sex, highlighting how chronic illnesses and disabilities affect Quality of Life issues such as self-love, relationships, and sex. If you’re interested in helping with this project, please check out their Medium page or find the project on Patreon.

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