You know that saying, “when one door closes, another door opens?” Or “when one door closes, a window opens,” or whatever the hell that saying is? Well life with multiple chronic illnesses has a somewhat similar saying, and it goes like this:
“When one door opens, another door opens, and then a window opens, and then part of the roof comes off, and then at least one side of the house falls down.”
And the reason we have that very famous saying (jk I obviously just made it up) is because when you are diagnosed with one autoimmune disease, chances are it has at least one other sibling in tow. But in all honesty it’s probably more like a family from the 1920s so it comes with 8-12 little disease siblings. So I guess when I was diagnosed with asthma as a child it opened the flood gates for illnesses.
I currently have 4(ish) diseases: asthma, lupus, gastroparesis and ehlers-danlos syndrome (still just a working diagnosis and I’m waiting for the confirmation from a geneticist). My body clearly thinks this is some sort of competition, and I am a competitive person by nature, therefore I’m racking them up like it’s what I do for a living. Actually, it technically IS what I do for a living right now because I’m on sick leave.
It’s funny (not funny ha ha) how you can go years and years without being able to get a single diagnosis when you’re sick, and then when you finally get what you think is your single, solitary disease diagnosis, all of a sudden your doctor just starts throwing them at you in rapid succession. I have to admit, I do find it very interesting (more in a a scientific, detached way) how autoimmune diseases work and that they never really seem to work alone. I guess it makes sense that your immune system is already malfunctioning, hence the reason you were diagnosed with an initial autoimmune disease, so of course it’s going to malfunction in more ways than one.
So talk to me. How many autoimmune diseases do you have? Which disease is the alpha? How many diseases are you diagnosed with a year? What’s your disease batting average? Is there a treatment method you tried that seemed to stop the autoimmune dominos effect? Should I just invest in buying myself a bubble?
I look forward to hearing your stories even though they will probably scare the crap out of me!
13 Comments on What It’s Like To Live With Multiple Autoimmune Diseases
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Jayne
February 12, 2017 at 4:24 pm (7 years ago)Nice post Lisa. Love the bit about disease batting average! Mine would be two, maybe three. Ehlers Danlos Syndrome (hypermobility type) and dysautonomia (definitely NCS but potentially POTS too).
damselinadress
February 12, 2017 at 4:26 pm (7 years ago)Thanks for sharing, Jayne! I’ve noticed that POTS seems to come along with EDS on a fairly consistent basis. Did you get the diagnoses at the same time?
Kat
February 12, 2017 at 5:05 pm (7 years ago)I was finally diagnosed with HEDS in December, and Mass Cell Activation Syndrome early this month. I was diagnosed with Chiari back in eighth grade, and they all seem to go together often as one really unfortunate chronically ill package! I likely have POTS as well.
Surprisingly enough, in my case I am learning that my newest diagnosis, MCAS, seems primary. When I keep my histamines under control, by taking a supplement and several medications, as well as consuming a histamine-balanced diet, my symptoms of my EDS and Chiari seem much more in check as well, and I have way more energy.
Laura
February 12, 2017 at 5:48 pm (7 years ago)I was diagnosed with celiac disease in 2012. That’s technically the only autoimmune disease I have, but I have since been diagnosed with endometriosis, adenomyosis, a prolactinoma (benign brain tumor on the pituitary gland, but I had surgery last year), an aneurysm, dysautonomia (specifically POTS) and probably Ehlers-Danlos, but, like you, I am waiting for an appointment with a geneticist to confirm in two weeks.
damselinadress
February 13, 2017 at 12:16 pm (7 years ago)That’s a nice long list. Geeeez.
Are they expecting type 3 EDS for you?
Bree
February 12, 2017 at 8:34 pm (7 years ago)ah yes..I have Hashimito thyroid disease, Rheumatoid Arthritis, Osteoprosis,, Fibromyalgia, Meniers disease, Asthma, Tuberous Sclerosis rare disease and Lymphangioleiomyomatosis known as Lam – a rare lung disease. I initially would have had lam and TS as I was born with these. However I then contracted epstein barr virus, which let me to have chronic fatigue. Then the thyroid and then all the others wanted a piece of the pie. Who knows if anything else is going to join me for the party on my immune system. I have changed my eating, so I don’t eat any grains, or legumes and very little dairy. This has helped a lot with the aches and pains.
Julia
April 3, 2017 at 6:58 am (6 years ago)Lupus, Chronic Autoimmune Urticaria, Asthma, Vitiligo, and poss Sjorgrens, time will tell on that one. Think the Urticaria gives me the most bother, closely followed by the lupus. Also have Chronic Fatigue Syndrome, fibromyalgia, GERD, IBS, arthritis, migraine, left side hemiblock in heart. The CFS/ fibro is a real pain.
Lucy
April 26, 2017 at 5:36 pm (6 years ago)I have Fibro as well it’s terrible sometimes my skin feels it’s on fire
Lucy
April 26, 2017 at 5:35 pm (6 years ago)I know how this feels. I started off with Graves disease hyperthyroidism, then ceoliac, now Fibromyalgia, IBS, pernicious anaemia, feel like I’m falling apart x
Anna
July 6, 2017 at 2:18 am (6 years ago)I have endometriosis and now waiting for the diagnosis for RA, though my test show negative RA factor, they still cant explain my hair fall, itching, migraine and joint pains and fatigue 🙁 now theyre testing me for vitamin deficiencies.
Rachel Koenning
August 16, 2017 at 12:29 pm (6 years ago)I have Pernicious Anemia, Gastroparesis, and Fibromyalgia…that I’ve been diagnosed with…
Amanda
November 5, 2017 at 7:07 pm (6 years ago)Autoimmune Hepatitis c, rheumatoid arthritis, fibromyalgia, vitiligo, IBS, thyroiditis, anemia and degenerative disc disease.
Janet
December 31, 2017 at 6:14 pm (6 years ago)Myalgic Encephalomyelitis (chronic fatigue syndrome), fibromyalgia, migraines, depression