Can years of masking break a person?

[Pupinski]

I'm 58 and have been referred for an ASD assessment (I think I may have ADD - is this assessed at the same time?). I was also diagnosed with ME 6 years ago.

Since my ME diagnosis I have lost contact with friends and never see anybody. This is partly because people just get on with their lives and lately because the effort of social contact is so draining for me (always has been, but more so now - I always used to force myself to make the effort).

Part of me is quite happy not trying to make contact with people and would be content never to have any contact with anybody - just me and my dogs. I get panicky when I have to deal with people - make GP/dentist appointments, etc. Another part of me feels guilty about this as this isn't how we're supposed to exist and sometimes, frankly, I'd love to have friends who I know cared for me.

Since being referred for ASD I've felt some relief and a bit of understanding of why I've never felt comfortable in my own skin. I've been wondering whether the ME is actually a result of decades of masking - trying to be somebody I'm not without being aware. I wonder whether my body and mind finally broke with the strain and gave up. Perhaps a bit of a niche question, but can anybody else relate?

I firmly believe my chronic illness (autoimmune disease) came on because I had to run my life in a state of stress constantly for years. I have ADHD and stress is a useful stimulant medication! It gets my brain going and working. On top of that it's also hugely stressful and exhausting hiding your lack of executive function from the world and running strategies to make up for it. So yes I suspect the stress and effort of masking may have led to physical health issues.

Yes it can... sadly. I am (another) mother who relatively recently realised in the course of having a child diagnosed that of course I have ASD, possibly ADHD too. I am only a bit younger than you - 49 - but also have ME and a bunch of other health issues that like you have meant that my friendships have fallen away. However, I also find myself cancelling social commitments as I am now anticipating just how stressful I find them (and the knock on effects of that on my health). I miss my friends though and get lonely. Phone calls help but in person meet ups can leave me exhausted for days.

I am quite sure that in my case there is a genetic issue (possibly EDS) which is linked to the ASD and immune issues and then there is a cascade of health problems that follow due to the stress of masking over very many years. I feel like I have thrown my self in the ring over and over in terms of work and social demands etc., am a consummate masker, but each time I incur another 'injury' and at this point (and partly due to aging) they have built up to such a point that I just don't have the resources to mask anymore (and also don't want to! Or at least to be able to choose rather than feel compelled to mask... and accept the cost of doing this). This was all a pretty accelerated process over the last 4/5 years (although of course in hindsight I was on a downward trajectory for many many years).

To stay as well as I can I now have to limit anything that requires me to mask... but that is a good lesson to learn and one that I am determined my ND children should also understand before they hurt themselves too much too. I am making progress with this.

There is also a huge challenge around masking being so ingrained for me, that when that goes what is left? I am spending a lot of time considering what the rest of my life can look like when I try and put the needs of my 'authentic' self first... I have had (and still have) so many identities that it's hard to work to work out what that 'authentic' self is too! This is the challenge for me now.

Thanks @TooManyPJs. So many things falling into place! I wish there was somebody in the medical profession who thinks holistically that I could work through this with. My GP definitely wouldn't get it and the ME clinic is focused solely on ME. Ho hum...

Anything that keeps you at an elevated stress level for a prolonged time, can make you ill, both mentally and physically. Short term, stress dampens your immune response, making you more likely to catch colds, the flu etc. Long term, obesity, heart disease, depression, and a strong correlation with auto immune diseases, and many more, including chronic fatigue syndrome (which I think is another term for ME? please correct me if I'm wrong).

There's quite a lot of research, and various articles, like this one;

www.nichd.nih.gov/newsroom/releases/stress

Oh gosh, I totally get that @maskersanonymous@maskersanonymous.Thank you for articulating it so clearly.

Can years of masking break a person?

Yes! I believe so Pupinski

I feel like I'm playing misery bingo here. M.E, MCAS, POTS, hEDS, ADHD, + undiagnosed (as yet) Autoimmune stuff.

Probably ASD too (I mask) but not assessed. Add to that caring responsibilities & childhood trauma & my M.E. is now severe (late 40's). I'm in bed, shattered & I honestly feel if I never see another person again, I'll probably be ok.

My masking has slipped in the last couple of visits & I was mortified for my visitors (& myself) but I just can't do it anymore.

Thanks for posting Pupinski. Hugs to you all in this select club. Heap huge amounts of kindness on yourselves at every opportunity. Oh & don't forget to ever push outside of your energy envelope like I did. I need a wheelchair now.

ExhaustedChameleon I am sorry to read that and thank you for the reminder not to overdo it. Masking often slips now too which makes me feel very vulnerable/exposed. I am also seeing a cardiologist next week about possible POTS and suspect MCAS too... misery bingo here we come.

Oh @ExhaustedChameleon I so understand that! I also feel like I'd be happy if I never see anybody again (but still feel lonely). I get panicky even at the thought of having to talk to the people I have to speak to - medical mostly.

Wheelchair user here too after over-doing things 🙋‍♀️ - from previously having a life that revolved around sports...

Look after yourself xx

Aaw, thanks @Pupinski & @maskersanonymous

Nice to touch base with you both. Sorry you're here too.

Yes maskers! Vulnerable is an excellent description when the mask slips.

Good luck with your Cardiologist. I hope he's educated + informed.

Exactly pupinski! I too get over-anxious before interactions, so the energy bank drains even faster.

I resent the amount of time I have to spend with medical professionals & getting paperwork together -with ADHD + anxiety- is a disaster. I blame the NHS for not believing I was seriously ill at the outset.

But Hallelujah for remote online appointments from my bed.

Would love to write loads more, but tank is low. Happy Wednesday to you both & any other dear souls that join us on our bench.

Hope you get out on the wheels soon Pupinski. No sportie in sight here xxx

I'm also struggling with auto immune stuff as well - weird allergies and interstitial cystitis. It's really difficult keeping track of how I have to control them and things I can and can't do otherwise I get a flare up.

I'd also agree that it can break you (or lead to trigger / exacerbate other health conditions)

I have hEDS, Fibro, Osteoarthritis and MCAS among other delights. It's always interesting that these mixes come up on autism forums / chats. There is a huge link. Also interesting that it's a higher percentage of women than men that have ME, Fibro, hEDS etc. Hormones must play a part. As does not being believed by doctors until we beg, scream, shout or go armed with NICE guidelines. I also think as women we are more inclined to be put on to, take on the bigger share of worry, parents, kids (wife work) etc. Not always, of course but anecdotally, there's a shed load of evidence out there that we take on so much, and eventually you fall off a cliff.

@RainbowZebraWarrior how does your MCAS manifest? I'm wondering if this is what's wrong with me.

@BarrowInFurnessRailwayStation MCAS manifests with me mostly in allergies, chronic spontanious urticaria, moderate to severe asthma and loads of food intolerances and sensitivities. Oh and temperature deregulation and PoTS. My Immunologist has sent me to a specialist consultant dietitian to start a low sulphite diet (sadly it's in everything!)

The attached pic I think shows best all the symptoms. I have them all, but could argue that my brain fog may be caused by menopause or my hEDS. As is my joint pain and fatigue

It's a pick n mix / double dip scenario.

@BarrowInFurnessRailwayStation I hadn't seen your previous post as our crossed. The interstitial cystitis is a common (and bloody awful one Both in MCAS and also hEDS patients.

Drat, I live in a really backward area, I can't see the GP even being able to pronounce interstitial cystitis let alone knowing what mast cells are 😣 how does POTs manifest?
Are sulphites mainly in processed foods? I'm having to clean eat at the moment due to low carbing. The only thing I can manage to drink is Evian water due to the IC. It's ruining my life. The GP prescribed some anti allergy eye drops advised by the eye hospital and I'm allergic to those 😠

tmsforacure.org/ American, but great graphics

What symptoms you might have

www.mastcellaction.org/

www.potsuk.org/

Took me ages to realise I had both. Because I wasn't fainting & in hospital with epipens 🙄

Like all conditions, it's a spectrum.

@BarrowInFurnessRailwayStation So sorry to hear about your IC. Mine massively improved with MCAS diet + medication. You could do a simple trial yourself? If you're able to.

www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf Use this internationally accepted Histamine food list from SIGHI. Just eat/drink the 0's or small amount of 1's.

You could trial over the counter anti-histamines too. Lots to choose from. Keep a daily diary. If you show improvements, this is evidence to share with your GP.

Lots of Long Covid now have POTS + MCAS, so becoming more topical. Plenty of webchats around.

Best of luck x

Thanks, that's really useful info. I take daily Fexofenadine and I'm supposed to have eye drops, but can't use the ones I was issued.

Really annoying about your eye drops Barrow

Not tolerating supplements or medication is sooo common with us Masties.

Luckily I tolerate this one. Sodium Chromoglicate is a mast cell stabiliser & many of us take SC orally too. www.boots.com/opticrom-hayfever-eye-drops-10ml-10173518

Sorry for the derailing @Pupinski

Oh yes. It certainly can and does.

The ones from the eye hospital were great, but the same drug from my local pharmacy must have been a cheap and nasty version because my eyes were so sore. One of the additives will have done it.

I'll see what ingredients are in the Opticrom eye drops.

I was taken aback to read that stomach and bowel problems can be linked to neurodiversity, as I've had IBS for years.

I masked up until 2017 when I took myself ‘out of circulation’ and decided i could no longer do it as it was exhausting

I’ve been in a state of burnout since then (I assume symptoms are similar to ME)