Somewhere I read that properly diagnosing a chronic illness can take from two to three years. Many of you wait even longer. In the meantime, while the doctors scratch their heads, we’re expected to be happy we’re alive. And that’s if they don’t write us off with “It’s psychological.”
It took a year and three doctors before I was diagnosed with scleroderma. Just remembering what I went through during that year-from-hell gets my blood boiling and I know I was one of the lucky ones.
If you are experiencing symptoms but don’t have a diagnosis yet, here are some tips that I hope will help you get through this trying time a little easier.
Trust yourself. You are not crazy. Physicians have referred many people to me before they had a diagnosis, even doctors who don’t know what else to do for their patients.
ALL of them eventually received a medical diagnosis. That’s right. All of them.
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I love this article! I have been living with MS since I was a young girl. I saw many doctors and nobody seemed to figure out what it was. I was often doubted by family therefore stopped sharing my symtoms with anyone. I was often told I was just lazy…thanks for this article : ).
Great article!
After three years I’m still undiagnosed. Thankfully I haven’t yet had any of my 7 doctors tell me it’s all in my head, but I’m pretty sure one thinks it is.
I wish you would have written this article before my mother passed away. When I was 17 I all of a sudden lost lots of weight, slept all day and had sever pain in my stomach. For years my mother took me to many doctors who told her that I was making myself have the pain, or it was depression, or I was making it up. At last at 23 I was diagonised with Crohns disease. My mother felt so guilty that she could not find a doctor before this to help me. It wasn’t her fault and I agree listen to your body and keep searching until you can find a doctor, support group or even a therapist to help. Also learn about your disease. I have been hospitals where the doctors tell you what you are feeling and do not listen to what you are telling them. (this was at a teaching hosptial). If this happens to you, you have the right to ask for another doctor to treat you. You know your body better then they do. Just because they have a degree, they are not always correct in how to treat you. Also find a support group. They are wonderful. People who do not have a chronic illness do not understand, and there are times that you need someone that understands what you are going though. I want to add one thing about replenish yourself; It is okay to cry, sometimes you need to cry to feel better. But I agree only do it for a short period of time, or else your illness will become worse. We all have to have a healthy attitude toward our disease, to survive the disease.
These stories make me so irritated. I was recently diagnosed with Lupus afer years of suffering. When the P.A. at my doctor’s office told me, “There’s nothing wrong with you, you just need an antidepressant,” I disagreed with him. He became angry with my disagreement, so he wrote in my chart that I was “displaying emotional lability.” To top it all off, I am a mental health professional! Several years ago, my mother was told that she was “imagining things” and there was nothing wrong with her. She died of Leukemia seven weeks later. I don’t even see the point in going to doctors at all when you are told, “It’s all in your head.”
Your readers should know that in some people (definitely not all people) with real, physical symptoms, their condition can be linked to significant psychosocial stresses. When those stresses are uncovered and treated, the symptoms improve. This form of illness is not imaginary or “all in your head” but is just as physiological in origin as any other condition I treat. Scleroderma is not a stress-related disorder but many other conditions can be such as neurocardiogenic syncope, irritable bowel syndrome, fibromyalgia, pelvic congestion, cyclic vomiting and a host of others. When looking for the cause of chronic, unexplained illness, the very real possibility of a stress-related cause should at least be considered. My website has more information.
Dave Clarke, MD
Clinical Assistant Professor Emeritus
Oregon Health & Science University
Back in the last 80s my sister started getting sick. She was allergic to a lot of environmental stuff and had reactions to things all the time. She went to probably every doctor you could think of and got all of the “It’s all in your head” diagnoses. She finally found a great allergy doctor who explained that her immune system was messed up. Still today we’re not exactly sure what is the problem, but it was telling how people would just write her off all those years.
I have to agree with Dr. Clark too. In my sister’s case, they do believe that a lot of stress could have caused her immune system to wear down and for things physically to go bad. So I can definitely see how psychological things can play a part. As long as doctors don’t immediately jump to an axis 2 diagnosis and cast it off as behavorial or my favorite “attention seeking.”
This is a great article on a topic that affects so many who are out there searching for a diagnosis to what usually is a myriad of symptoms that many doctors fail to put together.
I was diagnosed with SLE (Lupus) in 2008, after several years of being very sick. I saw many doctors who felt it could be lupus, but would not commit. I gave up altogether, and resigned myself to the fact that I would never find a solution, and that I would just have to live my life in pain and feeling very ill. A friend helped me to start searching again, and it finally payed off.
By the time I was officially diagnosed, it had begun to affect my kidneys and lungs. Had I been diagnosed sooner and treated, there is a good chance the disease would not have progressed to become organ-involved.
Try not to give up – there are MANY good doctors out there who do want to help, its a matter of perserverence and persistence.
Lauri Donnell
Just to add there are also those of us with chronic conditions that are “all in our heads” but it’s still nice to be treated like a rational being and have someone to try and sort it out. I hit a few folks who were really unfamiliar with dissociation (and seemd to think the only mental illness was depression and since I wasn’t depressed things must be okay) it took a while to find someone who knew what to do with me. We all knew it was psychological, but it was (and is) still real.
Thank you for this article. I have CRPS and the majority of our sufferers see an average of 5 doctors before getting a correct diagnosis. I am one of the lucky one and was diagnosed at 10 weeks, with an official diagnosis at 4 months. I had started complaining of symptoms 2 weeks after my car accident. No one was listening to me.
I had a PT tell me I had a neck injury and not CRPS because I was not displaying a long list symptoms he ran off.(My disorder doesn’t require you to display all the symptoms at one time, just at one time.) I left his office in pain never to return. He completely undid a nerve block. I told my Pain Management Doctor this guy was a quack and practicing medicine without a license.
I have also found once they attach a label on you, you can get rid of that. I was told 23 years ago I had IBS. I questioned the diagnosis since I have never had any bowel dysfunction. 3 years ago I got a GI to listen to me. I had a HIDA Scan and found out I had a low functional gallbladder. I had my GB removed and all my problems went away. They still tell me I could have IBS.
from a medical diagnosis framework, i certainly agree with Dr Clarke’s thoughts.
however i have to add from first hand experience, like most who have commented, that the tendency for many in the medical community to hastily laser focus on “it has to be stress” is wrong. if a patient doesn’t fit some perfect criteria, it seems all too often they get tossed into the “stress blackhole”.
finally, Congress has stepped in to help veterans whom so many have been tossed into the “stress blackhole”:
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According to a July 2010 Institute of Medicine report, approximately 250,000 of the 696,842 U.S. troops who served in the 1991 Gulf War remain debilitated by chronic multi-symptom illness, a condition that IOM made clear in its report cannot be linked to any psychiatric condition, a flawed but longstanding assertion of Defense officials in the 1990’s.
It is expected that President Obama will sign the bill into law in the upcoming days.
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i’ll add, that long standing flawed assertion has been in place long before the 1990′s and still persists currently.
I respectfully disagree with Dr. Clarke, stress may be coupled with a lot of those diseases he listed, but is not the cause. It is not in your head. It is physical. Unfortunately, their training tells them otherwise. Pity.
To everyone who has written,
I appreciate your comments and feedback so much. It doesn’t surprise me that there are so many who understand the frustration of being very sick, whether it is a physical OR a mental illness, and being dismissed as if we are making it up or have some control over it that we are refusing to use.
To be fair, Dr. Clark has a good point, too. I don’t know where his comment went, but if I recall correctly, he was saying that illness can be brought on or made worse by stress. My only objection is that such a statement, whether Dr. Clark intended it or not, smacks of blaming the victim, as if we are willfully making ourselves sick.
As a person with a chronic auto-immune disease, I have a huge responsibility to watch my stress level whenever I can. Managing work hours, how I eat, sleep, exercise, handling my kids’needs… I try hard to be reasonable with my mind and body, to keep that precious balance.
But here’s the truth: I can still have a flare up that seems to come out of nowhere, and other times when stress could easily have been a factor, like the death of my mother, which I had no control over. The thing is, every one of us has a weak point in our chain, where, if enough stress is applied, it breaks. For a healthy person it may be anger management, sleep problems, facial ticks, for us it is usually a relapse or aggravation of symptoms.
this is a simply brilliant article and so important for not only patients to read but also healthcare providers. You have put language on concepts that can feel very murky inside especially when there’s no diagnosis. Well done.
The facts are well spoken in this article the truth is that there are causes for every illness and there is cures for them too. Not everyone has the knowledge to answer where does it hurt that is why doctors should listen to all patients with a clear piece of paper.