Yes, an actual consultant for one of my autoimmune conditions actually said this to me. Well, that’s not entirely true. His exact words were “You seem to be really resistant to medication. I’m not entirely sure why you would want to move to a medication with a higher risk of adverse side effects, but if you are resistant to this one and I don’t see an improvement in your bloods then I will take it away from you.” What a dick.
Luckily for me, the new medication I requested has worked incredibly for the last 3 years. It’s like a big ‘fuck you’ each time the bloods come back! Until recently that is, sadly it is coming to the end of its life cycle with me. There aren’t many other options available to try, but that’s a story for another day. The reason this is important is because of the type of medication it is. A biologic.
Those who are a part of the chronic illness/autoimmune community will know how little support and information you are given when diagnosed with a new condition. I had to do months of research into ways I could help prolong my mobility, what I could do to stop the progression of the condition and what medications are most effective. At the time I did not know I was autistic. Another important fact here as this plays a huge part in what medication will actually work for you.
I had never heard of biologic medications and when I first looked into them I was terrified of needing to go onto them. They sounded like a last resort and did come with some scary side effects including increased risks of certain cancers. However, when I started my first round of treatment, the suppressants alongside the NSAIDs (non-steroidal anti-inflammatory drugs) I was put on made me incredibly poorly. They caused gastrointestinal issues and made no difference to my quality of life or my bloods. I was switched to a new one which sadly had an even more adverse effect on my body. I ended up hospitalised on multiple occasions and now have lasting liver damage due to the use of these drugs. I didn’t want to continue living in and out of hospital so asked to be considered for a biologic medication instead.
This is when Dr ‘Bedside Manners’ decided to patronise me and tell me I was being purposefully resistant to medication. Obviously, this annoyed me a lot and after I finished my meltdown about it, I did my research. Of course I did, the ‘tism always looks for the facts! Plus, there is nothing I love more than proving a man wrong.
Standard medications have never worked well for me. Pain relief doesn’t have a huge impact, NSAIDs cause severe gastro issues, SSRIs (Selective Serotonin Reuptake Inhibitors) did absolutely nothing for my mental health, in fact I again ended up hospitalised with heart concerns and other adverse side effects. The same goes for the migraine medications, nothing worked and on multiple occasions ended up hospitalised with the most ridiculous side effects such as suspected bleeds on the brain, intestinal concerns and sepsis. I know, it’s a very dramatic life I have lived!
I needed to know why none of the medications were working for me, was I actually the problem? Was I subconsciously resisting the medication?
I’m not going to lie, I googled it. I used what my husband calls ‘google-foo’ and found some really interesting answers, but ultimately…
It’s me, hi, I’m the problem it’s me!
Just not in the way I expected.
At the point I started my research into the medications and why they might not be working for me, I was also researching the possibility of being autistic and struggling with my mental health. It was that connection between the autism and the mental health medications that prompted me to look for alternatives for my autoimmune condition.
Often those who are late diagnosed autistic (and other forms of neurodivergence) are likely to have been diagnosed and ‘treated’ for things like anxiety, depression or even bipolar. You’ll go to the doctor telling them you are feeling low, having mood swings, struggling with daily tasks, not finding any joy in the things you usually would and they immediately slap you with a depression or something of the like diagnosis and chuck some pills at you, that inevitably won’t work. Because you aren’t necessarily depressed… but you could be experiencing autistic burnout. Something that has the same symptoms as depression, anxiety or even bipolar, but isn’t actually an issue with serotonin. Hence why the SSRI’s do absolutely fuck all for you, because there isn’t actually an issue with your serotonin levels/supplies. Of course, there will be some instances where depression and anxiety are comorbidities alongside the autism, but the efficacy of the SSRIs is likely to be reduced due to the neurotransmitter systems and neural connectivity being different in an autistic brain. This can cause an atypical response to medication, a form of resistance, if you will.
It is also really important to note that due to the differences in an autistic brain, they are also susceptible to having more adverse reactions to medications and suffering the more extreme side effects.
This is what happened (sometimes still happens) for me.
The medications I was ‘resistant’ to, rely on the brain being that of a neurotypical.
But a biologic medication doesn’t work in the same way. It doesn’t have anything to do with the brain. They work by targeting specific cells within the immune system to reduce inflammation. They target specific proteins such as TNF (Tumour Necrosis Factor). Biologics are designed to interrupt the specific parts of the immune response that cause disease. Meaning they go straight to the source and block the immune system from attacking itself, without the need for any neurological input.
Unfortunately, due to the nature of the way the biologic medications work, there are some quite severe side effects. I am severely immunocompromised, my digestive system is falling apart, I suffer from extreme fatigue and while this medication does help to slow the progression of my condition it doesn’t cure it. I currently only have 10-14 days a month where I have some relief from pain and this is rapidly declining. I am at the highest dose and due to other medical factors and conditions there is only 1 more biologic I can try after this one. And we just don’t know if it would work as well as this one has for me. Right now I am not willing to risk switching it. 10-14 days is better than none!
I am in an extremely fortunate position to have the opportunity to attend a 2 week residential rehabilitation programme for this condition early next year. It is a holistic approach to managing your condition and trying to have things in place before it is too late. Ultimately this condition will take my ability to walk in the future, but I want to do everything I can to try and keep some form of mobility and independence.
It’s been hard to accept all of these conditions over the last few years, and I am still coming to terms with acquiring a physical disability. But having the knowledge that I haven’t been doing anything wrong when it comes to medication not working did provide some reassurance. It is slightly annoying that this is how my brain works, but at least I know why!