Psychotherapy and Dysautonomia

  As many others who suffer from Dysautonomia I have been told the disease is in my head, I have been told I have anxiety, and many other assumptions. So, seeing a psychotherapist was out of the question because it would only confirm that my symptoms were do to some form of mental illness. I was absolutely against it and I would not budge in my reasoning behind it.

   When I was diagnosed with Amyloidosis, I decided I could no longer continue my journey alone. It was to much to deal with alone. To face your own mortality is a lot to processes, and me being a protective personality, I felt the responsibility to stay strong for my family and friends. I would continue on this three Month journey with feeling little emotions, and focusing on my friends and family. All this while believing I most likely had around 10 years to live.  During this time, I had come to the conclusion that the fact I had not mourned over my own mortality was not normal. I wrote up my will with very little emotion behind it, and it had become a joke to me. I need to add that the amyloidosis was thankfully a false diagnoses, at which it took three months to confirm. So yes, for three months I was convinced that I was dying. At this point decided it was time to see someone and talk to someone about what I was going through.

 I swallowed my pride and started seeing my first Psychotherapist. I would be lying if I didn't say that my first session was a disaster. Like every other Doctor I had seen, I had to justify my illness, explain that the illness was not in my head, but a legit physiological illness, and worst of all was pretty much accused of having a drug problem because of the amount of pills I had been on. Actually with the permission of the therapist I called, had another therapist in the session who's focus was people with chronic illnesses. I automatically shut down, it was like he was trying to diagnose me, with some kind of mental illness because of my physiological responses, and the pills I was on at the time. I went in defense mode. For most dysautonomia or patients with invisible illnesses, having to justify your illness, medications, or the fact that your sick and it's not in your head is not only frustrating, but it is exhausting and soul crushing. I honestly think by him questioning my illness when I was in such a fragile state hurt me more than helped me. Needless to say I never seen him again. My advice to patients out there is, nobody knows your body, or feels how you feel so don't allow them to write you off and make you question your own illness. Your sick you've established that, now find someone who can help you work through it.

  I continued seeing the original therapist, time had went by, I had found out that the amyloidosis was a false diagnosis and still had not mourned my own mortality, and showed very little emotion about the subject entirely. I had been dealing with some other personal issues that I will not go into on this blog, and instead of helping me cope with this illness (POTS/Dysautonomia/Gastroparesis) the therapist decided to do some Cognitive behavior therapy, and focus on my personal issues that were making me angry. So once again, I shoved down all those negative feelings about being sick, and focused on becoming more assertive in everyday situations. I'm not sure why she felt that was the focus for my therapy, but that is the direction she took it. We hardly ever talked about my illness, we would talk about my appointments at Stanford, and my IV therapy every once in a while. I was very limited on what I would tell her just because I got the since that she wasn't genuine, sometimes I had to remind her who I was. She would call me back after leaving a message and she wouldn't remember who I was. Now I wasn't a patient who would show up every week. It was a call as needed basis, so I understand I wasn't her only client. But when your distraught and you call your therapist and you have to remind her who you are, it's just frustrating and there were a few times I would almost say never mind I'll deal and hang up.

  I stopped seeing this therapist eventually, she wasn't being very helpful. I had hit my lowest low, and basically felt like I had to go through it myself. I had a few sessions with her, but really got nothing out of it. I would feel a little peace the rest of the day, and then back to the anxiety. I figured talking to my friends was just as effective.

 A few Months went by, and not only did I have my Dysautonomia stuff but some personal stuff creeping up on me. I was having anxiety attacks, nightmares, panic attacks. Anyone who has dysautonomia knows that stress exaggerates your symptoms. My parents had met someone through there church who did Psychotherapy and gave me her card. They had not been aware that I was seeing someone for therapy previously. I had seen a lot of horrible things, and have had a lot of horrible things happen to me prior to my dysautonomia and they were worried I had PTSD from that. I decided I would give it a shot, and I sent a email to this psychotherapist, honestly not really expecting anything out of it.

  My first visit with my psychotherapist was completely different than my first visit to the first psychotherapist. We talked, I told her my goals, gave her a brief history about myself, told her about my illness and in a defensive manner insured her I had been diagnosed by the Mayo Clinc, and Stanford and it wasn't in my head, and the list of medications is what keeps me able to somewhat function from day to day. At this point gloves were off, and I was ready for a argument. I was already in defensive mode. She softly and politely said ok, I believe you tell me about this illness you have. So I educated her about dysautonomia.

 The next session I came in, ready to defend my illness, and to my surprise she had done a ton of research on dysautonomia, and told me what she had learned and asked if there was anything I wanted to add. I was surprised and taken back that someone actually cared enough to research my illness. I could just feel off the psychotherapist that she genuinely did care, and was not judging me. She did believe me. This was the greatest gift she has given me yet.

 Months have gone by, and she has accommodated me through sessions when something we talk about triggers the POTS, she has also helped me figure out emotional triggers to my POTS. We have worked through some of those personal issues, but we are also working through my dealing with having a chronic illness that is invisible. I have also mourned my own mortality, finally. I am able to understand now that shutting down my emotions during those three months, wasn't that I wasn't normal, it was a coping mechanism. The emotions I was feeling at the time were to strong and I wasn't sure how to handle them, so I shut down and became a caretaker because that's all I knew how to do.

 The fact of the matter is, my therapy is far from over I have a lot of stuff I have to work through. But the purpose of me writing this blog is to encourage those with Dysautonomia, chronic illness, and invisible illnesses to seek out psychotherapy. You may have to go through a couple of therapist to find the right fit for you, but when you find the right therapist it is so worth it. I would be lying if I told you that the sessions are fun and enjoyable, they are mostly extremely hard, exhausting, and emotionally draining, you leave feeling vulnerable, sometimes angry and sometimes sad. However, through the processes of therapy if your willing to do the work, and take a good look at yourself, except the therapist observations as constructive criticism and not as insults and judgement, you will be able to discover more about yourself and learn how to deal with being sick. You'll learn different techniques just to help you deal with life. It's refreshing at the end, I highly encourage it.

 So, if you have a bad therapist don't give up, go looking for your fit, and if your thinking about seeing a therapist take the leap. You will grow from the experience. I hope this article has helped those out there struggling.

 This was written by a patient and has had no psychotherapist input :-)