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keobooks's avatar

How did you or a close friend or family member deal with the weird mixed emotions that sometimes happen when they started to recover from a chronic long term illness?

Asked by keobooks (12502 points ) September 28th, 2011

I’ve spent the last 10 years going to different doctors about my thyroid. I had several years of misdiagnosis, severe lack of cooperation with doctors, ineffective treatments and generally felt like nobody listened to me or really cared about whether or not it was possible for me to recover.

After all these years, I found an amazing doctor who ran the right tests and then gave me a pill which has made me feel so much better almost overnight. This isn’t a new experimental drug—in fact it’s older than the one I had been taking all these years.

I have more energy than I’ve had in a decade. I feel more than 10 years younger. I am so excited and I feel like I have hope for the first time in a very long time.

At the same time, I am starting to feel bitterness and anger. I wasn’t expecting these strong emotions. I am so angry that it took almost no effort at all for this new doctor to discover and diagnose a very simple, effective and inexpensive treatment. Had just one doctor listened to me in the past, it could have saved me a decade of pain and suffering.

I have gained 110 pounds. I gained so much weight that I need a special breathing machine to keep my throat from collapsing when I sleep ant try to breathe at the same time. had severe mood swings and difficulties with concentration and holding a job. I have deep scars all over my body from the chronic rashes and hives. I went from a very physically active person to someone who slept 16 hours a day and needed more sleep. I stopped enjoying just about everything that I felt made me really feel like me. I just became a big lump of sickness. I am getting better now, but it’s going to take several years to fix myself and I will never fully be back to what I was. I not only suffered physically, but I think of emotional social and employment problems and much of my entire life is in shambles that will take years to fix even if I work at it very hard.

I want to be more positive and joyful about my recovery, but these bitter angry thoughts keep coming back. I feel like writing horrible letters to the doctors and telling them I felt like they stole a decade of my life from me. I want them to lose their practices. I want them to pay for what they did.

I haven’t felt this vindictive in my life about anything. It’s putting a damper on what should otherwise be a very happy time in my life. I wondered if others had expierienced this. How did you cope? Are there any known support groups for situations like this?

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16 Answers

AmWiser's avatar

Knowing that you can’t get back those 10 years of misdiagnosis and severe lack of cooperation with doctors, etc., etc., being angry now is to much of a waste of engery. I do realize that many people cannot be thankful for what they have and would rather be angry at would could have been, when in fact you will never know what your life would have been like if not for an illness or setback. But try not to let feelings of anger overtake/stifle your need to get healthy.

I do agree that you should write letters to the doctors pointing out that you are now on the road to recovery because you found competent treatment (in your opinion).

janbb's avatar

I had a mis-diagnosis of keratoconus by eye doctors for about 5 years which would ultimately lead to blindness or corneal transplants. Finally, I went to a new ophthamologist who told me I had astigmatism which could be corrected by a prescription. I didn’t go through the same intense feelings as you because it was not as severe an issue but I was upset that I had been worried for 5 years over something that wasn’t a problem.

JLeslie's avatar

The only way I was able to cope and not focus on the anger, was to accept that many medical doctors are limited in their knowledge, or even medical science has not provided concrete answers. Sort of along the lines of, they are only human.

I also decided these things are a process. A process to find the right doctor, and a process learning that doctors can really be incompetent and suck all too often. I hope learning this dissappointing lesson, will save my life from something fatal in the future.

A lot of people, including many doctors, do not take thyroid problems serious enough. GP’s generally are not up to speed on thryoid treatments, but they feel very confident they can treat the problem. Not sure if the doctor you are angry with was a GP or endocrinologist? That was another lesson I learned during my medical problems, always see a specialist, and more than one.

Not sure if Armour thyroid is the new drug you are on, but you might want to know it only came back on the market in 2009 I think.

Also a warning. If you just started the new drug, please please please have your blood drawn to check your numbers every 6–8 weeks, two times in a row, to make sure you stay in normal ranges.

Another emotion when someone has been chronically ill, is it becomes part of their identity. How the illness limits them, how they have adjusted their life. And, even though getting better is a positive thing, there is an adjustment of identity sometimes. It can take a while to be your old self.

JLeslie's avatar

I’m just curious, previously did you have your TSH, T3, and T4 free checked regularly? Did your doctor allow your TSH to be above 3.5 and still tell you you are in the normal range? Most endocrinologists disagree with the normal range for TSH. Currently I think the labs say up to 5.5 is normal, but the endos have argued for several years it should be 3.5. I only ask because it is possible part of the reason you feel much better is simply your TSH has come down. But, many people do feel much better on armour, if indeed that is what you are taking now. I only know one person who was worse on it, and switched back. If your TSH has come down, just be careful not to let it go to low, you will slide right out of feeling great to feeling horrible again. Dry skin, rashes, hair loss, with the addition of anxiety, inability to sleep, and other problems can happen as you move into hyperthyroid. Some of the symptoms are exactly the same as hypo. That is why I recommended you get regular blood tests for at least 4 months, and then minimum every 6 months after that. Never wait a whole year. And learn when you feel great and where your numbers are, so you know what numbers you are shooting for when you feel bad.

Bellatrix's avatar

@keobooks I don’t know anything about the chronic illness you have suffered so it is great there are people like @JLeslie who can talk to you specifically about what you have been through. I do think though, the feelings of anger you have are perfectly normal. You must feel very let down. We are conditioned to think doctors should know or at least be able to find the information they need to help us to get better. For whatever reason, that didn’t happen in your case.

What about writing those letters but not sending them. Vent your feelings to these doctors and people who have not done the right thing in terms of your health care. Let out the anger you have. It might help. It might also be good to seek out a therapist you can talk to even for just a few sessions so you can talk through these feelings. I am a believer that negative feelings can have a physical effect and right now, you want to feel positive and continue to get better.

I am pleased you found a doctor who got to the bottom of your problems. Continue to get better @keobooks.

wiseacre's avatar

I’ve been going through something similar in this uphill hard battle to get back to normal (36 years of diabetes, and neck vertebrae rubbing nerves raw caused me to eat less and malnutriciously). Isn’t it more the loss of time being sick that you might be grieving over, if not the loss of things you know that you should not do anymore?

snowberry's avatar

I think it’s called grieving. Grieving for all the things that could have been, but cannot be. In addition when you were sick, life was somewhat predictable. Now that you’re getting better you have all sorts of new things to think about, which is welcome, but a stress nevertheless.

When this happened to me, I wanted to go back to my doctors and shake them and say, “Educate yourself! Don’t do this to anyone else!” I’m not sure if they would have appreciated my doing that. But you might consider doing that. It might be cathartic.

There are many things that cause your upsets, and all of them are legitimate. Be kind to yourself.

keobooks's avatar

@AmWiser forgive me,but I think you sound a bit preachy. I AM THANKFUL. I specifically mentioned this. I am having trouble because I am dealing with a surprising conflict within me about this. I constantly have a little jiminy cricket voice inside me shaming me for not being eternally grateful and wasting precious energy thinking negative thoughts and not being eternally happy about getting better or wasting time thinking about those ten years. I really didn’t want to get someone else doing the same thing,

I remember about 15 years ago or so reading an article that this was a perfectly normal part of a recovery period after a long time spent trying to get treatment and failing. I know you didn’t mean it, but your response was EXACTLY what I didn’t want to hear. Maybe you have been or will be able to have a 100% perfect attitude when your time came or comes about something like this. Good for you.

I know you offered some advice that others fave, but the “some people just can’t be grateful” thing totally turned me off. I’m trying to be grateful for your advice, but I’m having a hard time.

@janbb I think that would be stressful to go through that. I was just reading an article online about a woman who was told that she had this very rare form of cancer and had only months to live unless she went through this really aggressive chemotherapy immediately. She freaked out when the doctor told her there was no time to get a second opinion so she decided to not have the treatment and put her affairs in order. She got another doctor willing to help her through the dying process. He ran some tests and they discovered that she did not have the rare form of cancer at all. After surgery and some radiation treatment, she was just fine. She had the same conflicted feelings of gratefulness and relief, but was still very angry that a misdiagnosis led to so much needless agony for herself and her family

Your story reminds me of that. I bet going through a crisis of being told you were gloing blind was really really stressful beyond words.

@JLeslie thanks so much for the words of encouragement. I am glad to get your advice. My thyroid is being checked every 4 weeks right now. If you want to know more specifics. My TSH levels are normal. They are only at a 3 I believe. My T4 levels were on the low normal range but my T3 levels were very low. Because my thyroid condition presented in an unusual way, it was undetectable in the most standard test. My main anger was that the first doctor I went to refused to delve any deeper than the most basic test. Like you said, many doctors are clueless about thyroid disease yet feel that they can be trusted as experts on it. I was never referred to an endocrinologist before now because nobody thought I needed it.

I will be going to an endocrinologist after I am done nursing. The tests they want to run will have unreadable results while my hormones are “messed up” from nursing. My doctor believes that my thyroid disease is actually just a symptom of an adrenal or pituitary disease (She won’t tell me what she suspects, but my guess is Cushing’s disease) I am not forcing my daughter to wean, but I’m being very closely monitored until I can get the full diagnosis. I see my doctor every 4 weeks.

@Bellatrix, @wiseacre and @snowberry, thank you for the warm sentiments and sharing your own experience. THis message is too long already to individually speak to you so I just wanted to acknowledge that I read and appreciate your thoughts.

JLeslie's avatar

@keobooks I’m really sorry you are going through this. Low T3 would be enough to warrant trying Armour, although I am still not sure that is what the new doc put you on. Was your TSH always a 3? the chances that your TSH would stay the same while switching medications is highly improbable. Most docs like patients to be at a TSH between 1 and 2. I actually do not do well below 2. (remember the higher your TSH the more hypo you are and more medicine you need). Your TSH will lag behind your T3 and T4, so I am really happy your doctor is checking you often.

So you still are not going to an endocrinologist? Are you sure your previous doctor didn’t already test your Prolactin Levels before your pregnancy? I know we all agree he is a fuckhead, but he may have checked it and come back normal. Did you have discharge from your nipples previously? Before your pregnancy? I’m just curious why they are suspecting pituitary or adrenal. And, I hate when docs won’t say what they suspect when I prefer to know. Also, sometimes they don’t suspect necessarily, they just want to be sure they rule it out.

Not sure how long ago you had your baby, but also remember, new baby results in big fluctuations in hormones, plus new thyroid medication, plus finding out you may have suffered needlessly, and your family suffering as well, is so much at once. It seems completely normal to me you are extremely emotional right now.

Another thing is sometimes chronically ill patients get a burst of feeling they are finally diagnosed and can be cured. Unfortuneately this many times does not happen. They might get much better, but not a total cure. I hope you can completely recover from everything you deal with, I just wanted to warn you to take each improvement as it comes.

Let me know what they find out with your new tests. Wishing you the best :).

JLeslie's avatar

I forgot to add, I didn’t think ATCH, which is one blood test they do for Cushings, varies in pregnancy or while breast feeding, but I really am not sure. That is why I mentioned the Prolactin. Just that you became pregnant is a sign it might not be pituitary. Were your periods very irregular?

keobooks's avatar

I am on Armour thyroid, yes. Sorry I thought I said I was on this thread, but I actually only wrote it in a private message! Oops..

I am having trouble retrieving my old medical records from before I was pregnant. It’s a very long annoying story about that, but basically, my husband switched jobs and providers mid pregnancy and after trying for almost a year to get these records transferred over from the old provider to the new, I’ve given up. I found out my husbands old provider (which also happens to be the main Medicaid provider in our area) is locally famous for losing records in seas of red tape.

Thanks for all your posts.

JLeslie's avatar

@keobooks Have you just gone to their office and asked for a copy of the records? Stand in front of them. It usually is about $25 to get a copy, so be forwarned. But, at the same time, you are probably going to get retested for everything even if they ran tests before, so the old records might not matter much. You basically are starting from point A again, no need to dwell on what you might discover in the old records. It might make you more upset in the end.

keobooks's avatar

I may have to try going over and getting my records again. I tried it before, but I was 8 months pregnant and I couldn’t take my ADHD medication and was on a weaker antianxiety medication than I normally take. After two hours of trying to run to the different departments all over the hospital campus—having to stop and pee every 5 seconds, being spacy and having massive anxiety attacks I just gave up.

It seemed too much of an ordeal to go through ever again, but now that I’m not pregnant and on better meds, it probably wouldn’t take as long and I wouldn’t fall to pieces every time I got told I had been waiting in the wrong line or was in the wrong building.

The care I got from the Medicaid clinic was pretty decent, but the procedures, red tape, and the waiting game they force their patients to play is insane. I won’t talk politics too much here but I laugh when some people think poor people will hop over to a Medicaid clinic to milk the system for free care for every sniffle if they could. If you go in for the flu at 7 AM to one of those clinics, you MAY come home before 2PM if you’re lucky—and that’s if you didn’t need a prescription filled. Doing something unusual like asking for medical records and you may need to pack a few camp rations and bring a tent with you.

JLeslie's avatar

@keobooks I deal with medicaid for my aunt, and the red tape is overwhelming. Applying for other assistance is incredibly time consuming and stressful. The one problem with your example is I never go to the doctor for the flu. I would have to be dying, literally, not getting better after 6 days and getting worse. The flu is just keep the fever down, fluids and wait.

keobooks's avatar

Exactly. I’m pretty spoiled now with our new insurance plan. I never went for a flu either. I was just trying to think of an example. I DID go in with a cough that didn’t go away after a month. They gave me an antibiotic I was allergic to.. that was really not fun. To their credit, it was not on my chart that I was allergic because I didn’t know.

sujenk7422's avatar

I’m so sorry that you had a incompetent doctor who couldn’t diagnose the correct medication for your thyroid problem. I’m a program coordinator at a long term care facility where I have 4 ladies who suffer through thyroid issues. You’re right though, some doctors just don’t get it and someone with hypo-or-hyperthyroidism needs an endocrinologist to find the correct med to reach a therapeutic level. My brother has terrible problems with his thyroid and he has tried everything. The imbalances can cause several severe side effects – one SE my brother had was he felt that he was having a heart attack, ending up in the ER doing a stress test. Another really important issue with taking thyroid medications is that you take them with a small sip of water, 30 minutes before meals and other medications. This has helped one of the residents that I work with, for years she couldn’t seem to find the right med (hormone), now because she takes it first thing in the am, before drinking or eating anything else! I can appreciate your frustration and anger toward the other doctor, incompetence is a large pill to swallow especially with suffering for so many years, I’d say you have a right to be angry!

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