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).
Hi, I'm sorry to hear about your issues. I was suspected endometriosis too. I had a large tumour removed from my ovary after years of going through what you've explained there. I couldnt stand some days from the pain and would worry about soaking at work so would carry spare clothes.
I'm still not right but im feeling so much better since the removal after a 10 year watch and wait on the NHS. I was told it was a cyst originally until I changed hospitals.
Migraines, I've suffered since a child. I get the classic migraine, pain and sickness but so bad that if I move an inch I throw up. No pain meds helped. I saw a neurologist at one point as I started to get hemiplegic migraines if stressed (most of the time). These are similar to stroke symptoms so my left side of my body would stop working completely. I had to let people know as they thought stroke if they saw it.
I was given tramadol for the migraines by the neurologist but I had a bad reaction which ended up with me trying to take my own life. I then realised I'm highly sensitive to most medications.
I was found to have a hind brain hernia, on researching this it can be due to connective tissue weakness. I also have issues with my knees tearing and I'm very flexible.
Migraine wise, I cant take meds. Someone suggested a cefally device a few years ago. It was super pricey but I was desperate and saved. They also had a money back guarantee at the time so I tried it. I honestly thought it wouldnt work but was so desperate for the migraines to stop.
Anyway the cefaly works so well. I still get migraines but no where near as bad as they were if I use the cefaly as soon as I get the aura.
Ps I'm pretty sure I have asd but after trying stage 1 of the diagnosis process I couldnt cope to continue. My sister I wonder if shes asd too, she used to cut the labels from clothes, selective mutism amongst other things.
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.
It sounds like you’ve really suffered over the years too. In some ways, it’s heartening to know I’m not alone with all these issues, but it does make me sad and angry that there are more of us who have to fight so hard to be heard and to be helped.
Endometriosis is hugely common and hugely under-diagnosed, which makes no sense to me, especially given how awful it makes our lives. I’m so sorry you had to suffer so long to get help.
They only diagnosed my endo after a 14cm endometrioma ruptured and I had to undergo an emergency laparotomy, despite having spent the previous 3 years complaining to my GP about throwing up and fainting from the pain of my periods every month, and looking pregnant from the size of the mass in my pelvis (I’m fairly skinny anyway and had constant diarrhoea because my bowel couldn’t function properly from the mass, but still this didn’t set any alarm bells ringing). They also treated me pretty appallingly when I was taken into hospital too (“attention seeking”), despite the fact I could barely breathe from the amount of blood that was filling my abdomen and preventing my diaphragm from moving. They said it was “a bit of constipation” (hello, months of diarrhoea?!), gave me an enema (forcibly, which has left me prone to haemorrhoids ever since, cheers for that) and planned to discharge me the following day. Fortunately, all hell broke loose the next day when the consultant appeared on the ward and recognised exactly what was going on with me, although he suspected ovarian cancer, and I’m just grateful it wasn’t.
I’m glad you’ve found some relief from your migraines; it must have been terrifying when the hemiplegic attacks started. I’ve give up on meds and just trying to accept this is my new normal for now. Hopefully, once I can get comfortable in a new routine around these symptoms, I’ll feel stronger and be able to face the next fight to get more help. I completely understand why you weren’t able to pursue your ASD diagnosis further; it’s all so stressful and draining when you’re otherwise well, it’s a lot to deal with when you’re not.
Take good care. Xx
First up, if you think you have autism, then you probably do; it’s not like most people say, “When I grow up, I want to be diagnosed as autistic,” unless they really are and are struggling every day to cope with it, so no caveats required.
It sounds like you’re dealing with a lot. I am sorry. I hope you have supportive friends and family because that must feel terribly isolating at times.
I can definitely relate to what you say about anxiety and sensory issues, and the fact it acts in both directions. I used to spend a lot of time analysing and replaying conversations in my head as well, but since the ME started I just haven't had the energy to obsess quite so much, and the brain fog severely limits my memory (sometimes to the point of not even recalling having spoken to someone, much less what was said).
I agree with what everyone has said about digestive problems, and I’m certain this is part and parcel of the autism package; we’re just more sensitive to stimuli—lights, sounds, smells, chemicals and foods. I had loads of standard hospital tests, including a gastroscopy, which I found incredibly traumatic, before eventually going the ‘alternative’ route and being diagnosed with milk and gluten intolerance. And for me, it’s the animal milk protein I react to (nausea, stomach ache, diarrhoea), so all these lactose-free products are of no use to me.
Because of the ME, I’m actually on a fairly strict paleo diet (high protein, healthy fats, green veg), which means I don’t really eat any carbs so avoiding gluten isn’t that hard; it’s just when you eat out and they put it in coatings (like spicy chicken) or sauces (like gravy). I’ve also found since giving up carbs, including all natural and non-natural sugars, and fruit, I’m less volatile and less prone to meltdowns. It’s boring, but it keeps me relatively well and in control.
I really hope you get the help and answers you need to move forward. Take good care. Xx
I have a lot of anxiety phases. I also suffer from paranoia when stressed. I guess I've self taught myself to sort of ignore it recently in the last couple of years and even before I thought I might be on the AS. I got to 50 recently and realized I've had these periods all life and I have learned with experience and time that they'll go away. I also started stopping myself and questioning what I thought was reality or not- a great coping strategy I've found (A bit like that scientist in the film A Beautiful Mind)
That’s really interesting; thanks for sharing. I guess, with age, we gain greater perspective and self-awareness, which helps us develop more effective coping strategies... And, as Aspies, we’re good at spotting patterns!
I‘m definitely more self-aware than I was a decade ago, and owning my own home has given me the autonomy I need to control my environment, so who knows how enlightened I’ll be a decade from now?
My aspergers means i cannot process stress. 20 years ago, my life became very stressful and I developed ulcerative colitis - a classic stress-trigged disease. When my life becomes stressful, my health deriorates badly. I'm intolerant to all the normal meds so I quickly worked through them all until I ended up on some nasty immunosuppressants which took away my immune system and left me wide open for attack - I developed viral encephalitis which has badly damaged my memory and left me with CFS and chronic pain - and a number of other annoying health problems - and now I'm steroid-dependent with adrenal problems.
And my health still deteriorates with stress.
I do think my high pain threshold dosnt help me. Plus my husband says that I dont Express that I'm in pain! So I think I'm not taken seriously