A few weeks ago, I had the follow up with the rheumatologist I saw in January. The one who came highly recommended by multiple doctors I’ve seen. The one who spent over an hour and half with me at our initial appointment. The one who wrote the most thorough and accurate notes on my history and even sent them to me. The one who ordered spine x-rays, a DEXA bone scan, blood work for inflammatory bowel disease and who did a quick ultrasound of my shoulders. The one who knew about the pretty much unknown mast cell activation disorders and even knew most of the tests to order. The one who wrote a book called, “You Don’t Look Sick.” … So, you’d think he’d get it.
At one point, he asked, “Why are you in bed so much?”
I wasn’t sure how to answer. This was my second appointment in a row; I’d previously spent a useless hour with my therapist, not having anything to talk about and feeling out of place. Maybe my brain was ticking over even slower than I had realised.
“Because I’m sick…”
I thought he understood my illness because of the thorough chart notes, but I’d have to reread them. Maybe he didn’t understand the key part about ME and post-exertional malaise (second worst description of anything, ever, after chronic fatigue syndrome). Maybe he didn’t quite get that my battery dies very quickly and, if I push through, I’m in a world of hell and the battery never quite fully goes back to where it once was.
He said (and this is a direct quote), “If your hope for the future depends on getting disability, you’re not going to get out of bed.”
And then my brain blew up.
I know many, many people have dealt with this sort of thing before — this blatant skepticism about their illness — but I hadn’t. Nobody had ever questioned me to my face. I didn’t really hear anything else he said after that because I did a white-out with fury. This manifested itself with me bursting into tears, unfortunately. I told him I wanted to make it clear that I wasn’t in bed to try to get disability. He said something along the lines of: “It may not be that you’re a malingerer [I remember that word clearly], but that you subconsciously are staying in bed because you need the money.”
Wow.
I was raging. After waiting two years to apply for disability in the desperate hope that I could go back to work… after going from a happy, high-functioning person to practically an invalid… it was too much to think this might cross somebody’s mind. Why would I want to give up my whole life to get 1/10 of the money I used to make? I cried the whole way home. I kept thinking about it and crying the whole evening. Granted, I was premenstrual, but my anger can’t come out in yelling and stomping anymore, so it just bubbled out in tears. Would he have said that if my husband were with me? Would he have said that if I were bedbound with cancer?
There was slight vindication when he told me I had to try increasing my steps and I told him I have: from 500 in January to 1500 now.
Then he said I had to try “bicycle yoga”, lying down and I said, “I do! I try to do yoga poses and gentle stretches whenever possible.”
Then he said, “You need to come in here with a list of your current symptoms, your meds, your questions and concerns.” I waited for him to finish drawing an example of the page he wanted me to write and then I told him: “I did — it’s on the back of that sheet of paper.”
“Oh, I didn’t look at that,” he said. “A+.”
Amazingly, after this conversation, he told me my clinical diagnosis was mast cell activation syndrome (MCAS) and prescribed Cromolyn.
I smoldered for a week and then went to see my therapist who works in the same clinic and has known Dr. O for 37 years. I let loose on him. I railed for a full 45 minutes and was completely supported and validated. He said he’d seen it happen before and that, typically, when Dr. O is called out on his behaviour, he is blind to what he did and remorseful. He read me the notes that Dr. O had written and they were great — he wrote that he wanted to treat me for MCAS and also continue to look at inflammatory conditions, that I wasn’t depressed… There wasn’t a mention of ME in the notes and that’s how I wanted it. I went to him in the first place for his diagnostic talents, to have someone search for other possible answers. So, I’ve decided to give him another chance. My therapy session completely calmed my outraged soul and I’ve let it go. I think I will write Dr. O a letter when I feel up to it, explaining professionally why he was bone-headed and offensive. I’m actually looking forward to seeing him again, so I can be the calm, assertive person I normally am with doctors.
So, about MCAS: I haven’t dealt with scary symptoms (anaphylaxis, tongue swelling) in years and I react terribly to most medications, so I’m hesitant to start treating with mast cell stabilizers, histamine blockers or other anti-inflammatory drugs besides Prednisone. However, I wonder how many of my daily symptoms could be caused by mast cell problems (GI issues, bowel swelling, headaches, fatigue, brain fog, sinuses, pain etc.), so I’m also excited to have this diagnosis and the treatment options available. There’s also a teeny tiny part of me that whispers, What if your only problem is MCAS? What if mast cell problems caused everything from anaphylaxis until now? I don’t believe that — of course it’s multifactorial and involves many different pathways: immune, neurological, endocrine, gastrointestinal, vascular — but, there’s still a seed of excitement that something might make a difference.
Rag and Bone Shop of the Heart 
So glad I stayed reading to the end! Apart from the ignorant comment now dealt with, it sounds like Dr O is on your side… imagine if he stomps out some of your nasty body grumpiness??? yaaaay.. everything crossed!
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I don’t know if he’ll be able to help, or if I’ll be willing to take the meds he wants me to try, but we’ll see. I get more bold about trying things every day. 🙂
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Your post really “speaks” to me. I hope you can salvage your relationship with the doctor and the man apologizes!
Next to the horrible physical suffering, the idea that I somehow want to be sick, unable to care for myself, and be on disability, making a fraction of what I did before. It kills me to have lost my career and ability to provide for my family. Oh, and being in the process of losing our home is an added fun bonus! It blows my mind to that any human would think one of us chooses to live like this. I sure as hell don’t, and I know you don’t.
I’m glad you calmed down, but I’m still pissed on your behalf!
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Exactly! I’m probably not going to get disability and, even if I do, it’ll be years from now and a PITTANCE. Not enough to pay our mortgage, let alone other necessities.
Thank you for being pissed off on my behalf. A little bit of outrage tends to fuel my fire to educate more people. It also causes me not to sleep and makes my symptoms worse– maybe I need to tell him that in case he thinks he’s doing excellent cattle-prodding of his patients!
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I am still pissed off, too. However, from what the therapist said about Dr O, I will retract my theory that he may like to use shock techniques (“mobilise anger”) as a test. He just blurts out but does get it – perhaps subconsciously??
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Yep, sounds like he’s simply insensitive. I’d rather it be a calculated insult to illicit a response, honestly.
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I am still all ragey on your behalf – how could anyone think that!
good luck with the MCAS – I’ll stay posted for updates!
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Thanks, Claire! It’s great to have the support. I’m still flabbergasted that he said that to someone as sick as I am.
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Wow. It’s interesting to realize that sometimes when doctors say things like that they really don’t know what they did! I know all too well how that feels. Great post.
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I’m so sorry you know how this feels. I thought I might get away with not experiencing this sort of ignorance. Honestly, if someone in my life said that, they wouldn’t be in my life anymore. It’s amazing how we give doctors more leeway to be assess. 🙂
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I am so sorry. I have been there, too many times. It’s awful. My heart goes out to you.
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I hate that you’ve been there many times, too! I don’t understand how this happens so often. As much as I read about the problems with doctors thinking ME is “all in the head”, I thought maybe that was with milder cases or something… ? But, honestly, I’d rather have him say it’s somehow caused by my brain than I am PURPOSELY doing this to get disability! So insulting!
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It’s absurd. Completely absurd. And a glaring statement on the lack of doctor education about this illness.
I was told at my torturous lowest time that I made myself sick to have a “nice little break”. I was told that if I had children, I’d be motivated and would be better by now. I was told that I was imagining my crashes. Don’t even get me started. And some of these from doctors who seemed very normal up until those comments slipped out. The person who mentioned the children had spent the previous moments suggesting that I should probably see an infectious disease specialist. Where do those leaps come from?? Do they ask their cancer patients why they subconsciously didn’t want the chemo to work??
Anyway, again, I am SO sorry you encountered this. It’s a horrible slap in the face on top of the slap in the face that this illness naturally is already. Not only do you feel awful and have you lost so much of your life, but also instead of support and sympathy, you get ignorance and judgement and blame. I’m so very sorry. Hang in there.
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I’M JUST PLAIN SPEECHLESS–FOR ONCE! SO SORRY, THO! BIG HUG. BJ.
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Thanks, BJ. Good thing you’ve stopped making the rounds of doctors. 😉
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Big big hugs for this traumatising experience. I wish I had a £ for every time this has happened to me over the years – I’d be rich 😦
Saying all that I’m actually jealous of your 90 min appt. Here we get an average of 7 mins with a Consultant, which we’ve waited an average of 4 months to see. I’ve never spent more than 15 mins with any doctor in my entire life.
I was absolutely petrified to start my antihistamines, yet tolerate them both no problems (well, had a bit of an issue with Zantac but switched to Tagamet and all is good). 4 months on though and I still haven’t plucked up courage to try my Sodium C script 😉 Start off with a tiny dose and work up.
I’ve definitely seen improvement in my health (stamina in particular and brain fog) since doing MCAS protocol, although most of that has been down to diet for me and did take a good 4-6 months. I really hope you find the same. Jak x
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I’m sorry this has happened to you so many times…. and I know you’ve heard similar things from some family members, too, which breaks my heart.
You definitely make me feel better about our healthcare system, I must say. Over 90 minutes with this doctor, always 40 minutes with my GP and three hours at the intake with the naturopath!
You really make me think I should get more strict on my diet for longer. I think I have to reintroduce AIP foods like eggs, nuts, seeds, legumes and rein in the histamines again. And junk food. And sugar. I’d love improvement in brain fog. That would be incredible. Thanks for the comment! X
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Reminds me of the time an allergist said to me I had “princess in the pea syndrome” – Im not allergic to anything just over sensitive. That was the beginning of this 15 year long journey into the depths of ignorant doctors. I felt so lucky that I was educated enough and self diagnosed when I came drown with ME 5 years ago and went straight to an ME/CFS specialist too but after 2 years he said I can’t help you further. You need to spend 3 months in the sun surrounded by friends and family feeding you good food. Thanks – is the insurance company going to pay for that? and goodbye.
When I found a female doc 2 years ago who spent 3 hours analyzing my history (not so lucky about the $400 she charged and the weekly $600 treatments that followed) and turned to my husband and said “you’ll never understand what she’s going through as – it’s different for Moms” I cried with joy all the way home that Id finally found a doc who “got it” but then a few weeks later when I asked her should I get a wheelchair to get out as I was housebound, she said “do you want your kids to see you in a wheelchair?” and walked out. Who cares,my kids were overjoyed that I could come out to the park with them when I finally got one and Ciara rides on the back like its her chariot! No matter how much we think we’ve found a doctor who gets it, they don’t really unless they’ve had ME. More docs need to get ME not that I wish this evil disease on anyone.
Hang in there
xo
Aisling
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Aisling! Lovely to see you here. I was told I had “Princess and the Pea Syndrome” by my sleep doctor–his exact words! I want to spend three months in the sun being cooked for, too! I want to ask you if that was Dr. E. that was treating you, but don’t want to mention his name if you’re trying to maintain privacy.
I have a history of loving doctors who take the time to listen and be supportive the first visit, only to be disappointed by the follow-ups. That’s why I’m so hesitant to see the private doctors. So far, my ND has cost almost $600 for two appointments and a few emails. The doctor everyone recommends is $450, so I keep not going…
I’m thrilled you got out on your wheelchair with your kids! Being on my mobility scooter with my dog the first time made me weep. 🙂
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[…] was recently diagnosed with mast cell activation syndrome and I am also looking into high mycotoxin urine tests and deficiencies in my methylation […]
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