How do I deal with other people's reaction to my diagnosis?

I’m very sorry for your situation, @keobooks

First, I would say you don’t have to tell anyone what your diagnosis may be. Wait until you know what it is.

Second, assuming this does turn out to be Chronic Fatigue Syndrome, I would urge you to ask your doctor what resources are available for people to deal with it, and with people’s reactions to it. You are not the only one who has had to face this. Surely there is help available.

Your husband sounds like a dick.

I would be willing to bet that there are support goups in your area. You are not alone – there are plenty of folks out there facing the same dilema as you, and talking it out is bound to help.

Your husband’s reaction is quite typical, @keobooks. We see this reaction a lot in the autism community from fathers not willing to accept life as it will be once they hear the diagnosis is official. It’s a grieving process.

As for whatever your official diagnosis will be, I have similar due to an auto-immune condition, and chronic fatigue is part of my daily life. I strongly recommend you (and your husband once he’s moved through the process) learn the Spoon Theory As an FYI: Sometimes in various communities, the “spoons” are referred to as “tokens” instead. We call it “Token Theory” in the autism community. Some hospitals give Spoon Theory Therapy presentations.

If you’d ever like to chat you know how to find me here & in Facebookland. I’m always wiling to chat, brainstorm, or just be a shoulder when you need one.

You & your husband will probably need a therapist well-versed in auto-immune conditions to help you both work through this process together. It is typical for one partner or even both to get stuck in part of the grieving process. It sounds to me like your husband thought, or was looking forward to a magic pill solution. It happens all too frequently.

I could write all day and not improve on the link from @SpatzieLover.

@Jeruba had good advice, too: don’t cross bridges you haven’t come to yet.

I would also add, though, that you’re under no obligation to explain or defend your life to anyone. Not to anyone.

Fibromyalgia and Chronic Fatigue Syndrome are real and are widely recognised by those in the medical profession. There are fools and know-it-alls who claim to be able to distinguish between disorders they know about and others about which they are ignorant. Whatever symptoms you have and whatever diagnosis your doctor suggests you have, the important thing is to learn everything you can about your condition and work with your doctor to learn to cope with what you have and to function as well as you can. Don’t spare a moment to give attention to those who challenge your symptoms or your diagnosis. They are support groups on facebook and from there you will find other helpful links elsewhere on the web. Know one can take away your self-respect unless you allow them to do so.

I’m so sorry that you’re going through this. Chronic Fatigue is very real, and I know from experience.

I read this to my husband and at this point -

He was silent for a long time and said that he didn’t want to take care of me.

- he looked shocked and said “What a piece of shit!” I must admit, I concur. I don’t care how “typical” or “normal” his feelings are. Even if he wasn’t a therapist, you’re his wife. “In sickness and in health” – this is where that part of his promise to you should come in. He’s too upset to support you? Bullshit. How incredibly selfish.

I wish I could offer advice there, but that just pissed me off. I don’t know him, so I’ll refrain from saying what I’d do.

As for your family, try to educate them. My husband thought depression didn’t even exist when we first got together. He just thought people were whiny and wanted attention, so they called it “depression” so they could get happy pills. He now knows better. Show them some literature.

I’ve been thinking about this sort of problem a lot lately. I’m going through the long (and I mean long) process of getting a diagnosis, and I’ve been wondering what I’m going to do if I get a less-than-tangible diagnosis. No one around me really knows what’s going on, and I’ve been thinking about how (and if) I’ll explain my diagnosis to those around me who don’t really know me that well.

I’ve come to a few decisions:
1) I’m not going to say anything publicly (like on Facebook or in church) until I have a definitive answer. This way, I can postpone the endless questions like “what’s wrong with you” and “how are you” when no one really means it. Feigned concern is not something I need.
2) No one can take my self-respect away from me unless I let them. I know I have something really wrong with me. Although, I do have times every so often when I feel like it’s all psychosomatic.
3) I am picking my support system. This group of people is people I’ve always gotten refreshment from, and I need them around me right now. When I have these people around me, I can be at my best and take care of myself better. That’s important right now.

@keobooks Chronic Fatigue is very real. You just do not have very supportive people around you. I am so sorry that you are ill and dealing with all of this negativity as well.

Find an online support group. Some places with a high rate of air exchange have been found to be very good for those with Chronic Fatigue Syndrome. If you could move to one of those places (like Whidbey Island WA) your symptoms might very well improve.

Please take care of yourself.

If the diagnosis comes back as CFS and not one of the more specific things lumped under that catch-all, then tell your husband (or as @sys pointed out, “dick”) that it’s myalgic encephalomyelitis. Meanwhile research treatment regimens for CFS, support groups, etc. Bear in mind it was not sop long ago people didn’t believe cancer was real unless it manifested itself on the surface of the skin or killed you. There is a great deal we still have to learn about the human body and as we learn, hope emerges for diseases and disorders that, until recently, were thought to be untreatable. Hang in there, lady…

Goodness, I can’t add to the advice above in terms of how to share information about your condition once it’s confirmed. I just wanted to send you a hug. I hope your husband responds more sensitively once he’s had time to process things.

Thanks for the spoon theory site @Spatzie_Lover. It looked like a wonderful site.

@keobooks First: Give your self time to adjust. It is a shock to you no matter what you have and I would suggest therapy. Also knowledge is power. Though not always easy. Hopefully you will find amazing resources and support. Hang in there. Also a journal just kind devoted to your sickness. Different observations, fears coping things you found. Days you feel worse and what you did that day or the day before. Maybe you will notice patterns and find things that specifically help you.

Also I wish I had kept a better log or various diagnoses that I was tested for and a list of symptoms etc dates years onset with this and try to distilled it. A new doctor will always ask you to tell him how ever many records you give them. Also it helps you. If you let them just take tests and not ask what they are testing for it expands the feeling of powerlessness and involvement. Or so I found out for me.

As to every one else. I wish I had a good answer for you. I just got around telling a wider circle of people I have major health issues. I got a lot of shock and awkwardness though general support. Others who knew I was sick but not how seriously and were skeptical and knowitalls before were taken equally aback. I tried to grant them leniency and give them time to adjust too. If they ask for more info I give it. I also try to be matter of fact as possible. I realize everyone has a burden to carry and each person struggles with it. But I do guard myself around certain people. You’ll know who they are I found they are usually struggling wrestling with something pretty hard. But if I can avid them I will. Just try not to take it too seriously. Including family I found that some of my biggest in your face disbelievers were extended family. Maybe they are in denial about their own health issues. But I generally just choose to spend time and get support for elsewhere.

Your husband is tough. That no matter if he adjusts later more gracefully the hurt and betrayal is always going to be there. Unless ya’ll seriously process it later. There is no easy answer for that, you will get through it though. Love and hugs.

Oh, man…I feel your pain. I had the very same reaction when I was diagnosed with fibromyalgia many years ago. I remember crying and telling my doctor, “But, I don’t even believe in that!” Honestly, though, once I accepted the diagnosis and started getting the proper treatment for it, my life improved immensely. So make sure you can accept it, if CF turns out to be what you’ve got.

My ex-husband was less than stellar in his reaction/support, too. He got better, but never great about it. For a long time, I just told most people I had a “chronic pain condition”, rather than utter the “F” word, because I knew from experience what kind of reactions I might get. I’ve mostly made my peace with it now, and no longer shy away from talking about it. I’ve even shared the “spoons” thing with family and friends. People being open about stuff like this helps raise public awareness, which increases understanding and acceptance in the long run.

Such a diagnosis is more accepted these days, though certainly not by everyone. Those folks who don’t believe in my condition can kiss my ass, so far as I’m concerned. It doesn’t matter that they don’t believe in it, or that I didn’t believe in it at first, either. I’ve got it, and it is what it is. Keep your focus on what you and your doctor can do to improve the quality of your life. That’s really the important thing.

I wanted to thank everyone for responses and PMs. I am a bit busy to talk right now except to say it’s a little bit better. My husband is not generally a jerk, but has always had chronic foot in mouth syndrome. I can usually overlook this, but with my own feelings of grief over this, I couldn’t.

I have to admit—I wanted a quick fix too. And I am upset that I had assumed this current state of affairs was just a detour in my life, and I’d be back to being extremely energetic and thin if I just had a pill or a surgery. But this is who I am now and that other person is gone—and has been gone a long time.

For whatever it’s worth, I have a friend who suffered from Chronic Fatigue for years, she was unable to work and rested a lot of the day. Today she is completely well, works full-time as a librarian and leads a busy life. So don’t be tempted to think you are stuck with chronic fatigue forever. And if the medical profession has nothing to offer in the way of treatment, or even if they do, why not visit a naturopath and see what she/he has to offer in the way of advice, especially in so far as diet is concerned.

I have a friend who lives out of State who just graduated and became a naturopath. I am a bit apprehensive about going to one because they are not covered by my insurance, but some of them seem to offer sliding scale fees. Maybe I will check them out.

@keobooks I have no idea what it would cost to see a naturopath in the US, in NZ I expect it would cost around $100 for cancer and somewhat less for following visits.

@keobooks Rereading the above post today, where did where the word cancer came from? I can only imagine it was the result of using voice activated dictation… It should have read for the initial visit : ^)

@Adagio Cancer, first initial visit…what’s the difference? :)

Tell them it’s ICD-10 G93.3, a worldwide standard endorsed by WHO.

@Adagio—I just assumed you meant it cost 100 to treat cancer and less to treat other conditions for some reason.

Just for anyone interested, I finally got to see my doctor again and it’s NOT chronic fatigue. My cortisol levels are high and they are going to do some more tests and find out why. I also lost 7 pounds since I last went to the doctor. The only changes I made were to work out ½ hour every day (walking in the pool holding my daughter) and stop eating fast food.

So I ended up getting a diagnosis that people are more forgiving about.