I’d be really interested to hear your experiences please. I ask because I have a number of health problems and the health services available to me only seem able to deal with one problem at a time and saying to them, “Yes, but I also have X, which means I can’t do that,” just gets you a disparaging look and labelled as uncooperative or a time-waster. I am certain I’m not alone in this, and I’m certain also that looking younger than I am and lacking mature social skills only makes their criticism more likely.
In addition to Asperger’s, I also have ME, endometriosis and chronic vestibular migraine. Here a few ways in which it’s a pretty toxic combo:
1. Asperger’s and ME
- Once my brain is interested in something, it can keep going and going, and I don’t notice my body fading until I completely crash and end up bed-ridden for days. I then get so frustrated with my body getting in my way that I self harm.
- Unexpected interactions with people make me so anxious that my legs give out. The situations don’t necessarily involve people at the time, such as a letter through the door, but require fighting my corner with someone to resolve. E.g. I received a letter from HMRC on Monday fining me for something I haven’t done; it’s now Thursday and I’m only just starting to be able to walk again, but just writing about this I can feel my legs giving out again.
2. Asperger’s and endometriosis
- I worry constantly about getting my period because sometimes it comes on heavily and suddenly and soaks through my clothes. It’s disgusting and embarrassing, I hate how I can smell the blood on me even when no one can see it, and the pelvic pain makes me feel poorly generally. Even on the pill, my cycle has been all over the place, and with my ME I often don’t have the energy to clean myself up and do other basic things like feed myself, so I always end up suffering one way or another.
- I’ve always hated having to go into work on period days; my stress and anxiety levels are always off the scale and masking that impacts on my ME, so I basically end up eating, sleeping and washing, with no energy for anything remotely enjoyable pretty much all month long. I know it’s an overreaction but hey, I’m autistic.
3. Asperger’s and migraine
- Chronic vestibular migraine is weird because you experience dizziness and nausea/vomiting rather than the classic pain. The ‘chronic’ bit in my case means ‘constant’; that is to say I am never symptom-free, I just have different degrees of bad. Meds haven’t worked, and one of them actually made me suicidal. It renders me housebound and is the reason I lost my job and my business a year ago. I was earning pro-rata £95k a year as a self-employed business analyst up to that point (I say pro-rata because the migraine started only 10 months into my first year of trading).
- Makes the Asperger’s worse because I struggle to mask now, and the extra struggle when I really have to mask makes the ME worse, and the stress of knowing I struggle to mask makes the endometriosis worse (more random bleeding throughout the month).
- Since being out of work with the migraine, I’ve been told I’m not entitled to any benefits. I don’t have the physical or mental energy to fight this at the moment so I’m sleeping in my living room and renting out my bedrooms to pay my bills and mortgage. Both lodgers usually work long hours, but occasionally, randomly come home early, and it completely freaks me out. My home was my one safe place in the whole world and now I cower here like a terrified prisoner. If they come home early and I haven’t had my dinner yet, I just go to bed hungry rather than risk bumping into them in the kitchen and being forced into small talk, which just wipes me out. If I wake up in the night and need to pee, I just lie there for the rest of the night with my legs crossed until they’ve both gone to work. It’s easier on the weekends because my boyfriend is here and I can deflect things onto him, but I’m now constantly anxious in my own home which I hate. I also have noisy neighbours which I can’t get any respite from and makes my stress, anxiety and migraine even worse, and impacts on the ME too.
Sorry this is such a ridiculously long post but I’m really hoping it resonates with other adults with ASD, as it would be good to know how you cope (or don’t, as in my case).
I'm really sorry to hear you're struggling. There are a few things for me too (I should caveat that I'm still awaiting diagnosis, but I'm pretty certain I'm autistic)...
1. OCD - the worst of all my conditions. I've had it as long as I can remember, but only really found out what it was in adult life. I'm plagued by intrusive thoughts and my head is just a constant stream of filler thoughts to keep the bad ones out. I have a lot of obsessions and they're exhausting. I have heard that autistic people are more at risk of OCD, since our brains are naturally wired for repetitive behaviour. The difference is that autistic repetitive behaviours are soothing, whereas OCD compulsions cause distress. The autism does make it difficult to differentiate sometimes - it can be hard to tell what's OCD and what's an autistic repetitive behaviour, so I have to pay really close attention to how an activity makes me feel. Am I doing that behaviour because I want to, or because I feel like I have to? I'm trying to combat it through cognitive behavioural therapy. It's tough, but it'll be worth it if I can shake off even some of these OCD symptoms.
2. Anxiety - another tough one. Anxiety and autism seem to go hand-in-hand for me; I get more sensory issues when I'm anxious, and sensory issues increase my anxiety. This often leads to meltdowns for me. I also over-analyse every conversation, which might be partially down to the fact that I have to really think about communicating, since a lot of things don't come naturally to me (like interpreting sarcasm, giving eye contact etc.). I often wear noise-cancelling headphones to try and manage the sensory issues, and I try to take time out when I'm feeling overwhelmed. I've found a weighted blanket very helpful when I'm feeling anxious.
3. Depression - I think this is caused by the aforementioned OCD and anxiety. Depression only tends to make an appearance when those two are being extra troublesome.
4. Digestive issues - I'm currently having tests to determine whether I have IBS, or some kind of inflammatory condition. My stomach problems definitely worsen when I'm anxious and I've heard that autistic people can also be quite prone to stomach problems, so perhaps there's a link there. Currently awaiting more advice from the doctors.
Oh I have the stomach issue. I found out that I cant have dairy
It's very annoying, isn't it? That's interesting - maybe I have an intolerance I don't know about.