I was "diagnosed" with CFS in 2004. Main symptoms: fatigue, balance problems, pins and needles, weakness in legs and migraine.
I recently saw an ENT about some balance problems I was having. Together with the chronic fatigue I've been suffering with for years, it has been making me feel "spaced out"... at least that's how I described it to the ENT, who then suggested I had depersonalisation disorder (despite not being a qualified psychiatrist).
I am finding it increasingly difficult to explain to doctors that I'm not
mentally ill. I don't feel depressed and having read up about it, I certainly don't have depersonalisation disorder. I feel extremely tired and dizzy (in that things which I know can't be moving, look like they're moving) - I dare anyone with those two symptoms not to feel "spaced out". And yet I feel like I'm having to fight against doctors who think I must be mentally ill.
My GP has referred me to a neurologist. I want the neurologist to discount every possible physical problem before diagnosing any more supposed mental health problems. But I hate going to see doctors now, so I come across as anxious (which I am at the time) and yes, consequently, possibly slightly mentally off-balance. This means I usually leave without any tests having been done - the ENT fobbed me off with "it's migraine causing the dizziness" but wrote to my GP saying that it's all in my head.
It makes me so angry! My family are cross and frustrated too, because they see me every day and tell me that I'm not depressed or mentally ill. Even one of my friends, who's a doctor himself, says I'm not mentally ill. I just don't know what to do - I really want the neurology appointment to rule in/out physical causes of my symptoms, but after my ENT appointment, I don't hold out much hope.
In the past I've gone months without seeing a doctor, putting up with my symptoms in preference to being given unneeded antidepressants or being told that if I think positively it'll all go away. This time I promised my family that I would keep going to the doctors until they found out what was really wrong, but it's so hard... I have managed to do additional A-levels, work full-time, start an MSc at uni and a new career, have a reasonably active social life and a supportive partner. My family would say that I'm balanced, grounded and enjoy life in spite of being ill. Why can't the doctors see that???? Why do they persist in suggesting I'm depressed or have a dissociative disorder? It's all so frustrating.