Hello, I’m glad you are interested in my story. I hope you can gain something for yourself from this story.
Symptoms
My symptoms are very variable, and the list is too long to name them all. The main difficulties I have are with my stomach, bowel and bladder. I get up many times to go to the toilet during the night, or I get tinnitus that keeps me awake. Tiredness is the most difficult problem for me.
My symptoms almost always appear one at a time but it feels like when I manage to contain one symptom, another one arises immediately afterwards.
The Beginning of Symptoms
It is impossible for me to pinpoint one cause for my symptoms. Since I was 12 years old I had headaches every time after going running. Aged 14 I started to get shoulder pains that came and went without a pattern.
My current symptoms started one day in my last year of school, when I was sitting in class. I felt an unusual sensation of pressure in my pelvic area. It came out of the blue, and made me feel restless, like I needed to pee. I went to the doctor the next day, where they did some tests for infection. The smear test was positive so they gave me some antibiotics. However the antibiotics did not sort the problem out. The feeling of pressure developed into a pain in my penis and alternated from then on, when one problem was there, the other was gone and vice versa. It was difficult for me to focus or sit still long, and I felt I always needed to pee. This problem continued for the whole of my last year at school, and affected my ability to take my exams.
Medical tests and medications
I had many more medical examinations and tests over the last 5 years, but nothing came back positive. Either the physical examinations were without findings or something non-specific was found, like the eyes are irritated, nose is irritated, there is too much air in the gastrointestinal tract.
Taking medication has only helped when I had headaches or aching limbs, usually in the form of shoulder pain. Taking a painkiller eliminates the pain after a short time. All other medicines for the other symptoms have had no effect so far.
Growing up and anxiety
I have come to believe that my symptoms are related in large part to anxiety. From childhood I have been shy and being around a lot of people always caused me anxiety. At the same time, for as long as I can remember, I have been bottling up my emotions and feelings. I feel that many emotions are perceived as something bad and it makes me feel worse and often guilty. I often ask myself, ‘What is the point of showing my difficult emotions to other people? My experience is that many people respond negatively, and I suffer more than if I had not shown these emotions at all.
In the last years at grammar school I became more and more anxious about my schoolwork, I was very afraid of failing and being exposed. I had a period of depression which had meant I needed to take a year off school when I was 17 in 2016, but I still wanted to pass my exams so I could go to a university to study. When I returned to school, I felt awkward in the breaks because I didn’t know people in the year group. I got into the habit of going to the toilet during the breaks to avoid being seen alone.
During my last year of school in 2018, when the symptoms developed, I was doing very little sport or anything else that was fun. I felt like I had to study hard, and spent all my time sitting and studying. Even if I had symptoms I would push through and carry on working.
My experience of treatment
I have had inpatient and outpatient treatment for functional somatic symptoms. My inpatient therapy took place in the psychosomatic department of the large university hospital in Hamburg in 2020.
A day at the clinic lasted from 7.15am to 6.30pm with different breaks depending on the day. The treatment plan included the following activities and therapies: exercise group, one-to-one sessions, art therapy, mindfulness, medical check-ups, depression group, yoga, breathing therapy, a group where patients could voice their concerns which were then discussed together, physiotherapy, social competence training group, and PMR (progressive muscle relaxation).
Most of the therapies have been fun and interesting, and immediately after leaving hospital, I was sure that I could reduce the symptoms or even make them disappear completely with the “tools” I learned there. 3 years later, it turns out that unfortunately for me it was not this simple.
I liked all the sports therapies because sports have always been very important to me and I could block out everything else and focus on sports. I found the breathing therapy exciting because I had the feeling that I could effectively regulate my nervousness in tense situations, such as before a school assignment, by breathing rhythms.
Art therapy and progressive muscle relaxation, on the other hand, did not help me at all. Personally, I can’t express my physical nor my emotional feelings with art. In progressive muscle relaxation, with my symptoms, I did not manage at all to first tense and then relax my different body parts. My body was so restless and shaky that I had to get up and move because I could no longer sit.
The most positive thing about the inpatient treatment was definitely the family atmosphere on our ward. My fellow patients all did their best to make sure that, despite the difficult situation, we all had it as good as possible, and I made some new friends.
What I have learnt
Even though these treatments have not freed me of symptoms, I was able to take a few things with me for my everyday life. The SKT group (Social Competence Training), in which we mostly role-played everyday situations in order to feel more comfortable and secure in them, deserves a positive mention. Since school I have been afraid of certain everyday situations because I could embarrass myself in front of others. Since the Social Competence Training, however, I have actually become better at it.
I also was able to learn some positive things from behavioural therapy. I got to know the stress model for the first time in my life and found it very helpful. I have also been able to apply it in a few situations.
For example, when I was shopping and standing at the checkout, I always stressed myself out to pack everything into my backpack as quickly as possible because I was afraid of stupid remarks and comments from the people standing behind me in the queue. Now I can withstand the pressure because nothing bad happens most of the time anyway. If they do make a stupid remark, I have counter remarks ready.
Something else that I learnt, that sounds very simple, but is difficult for me to implement, is being OK not to be available all the time for everyone. I’m allowed to have my mobile phone off and concentrate on other things. If I miss a call, I can call back later for instance.
There are also some specific things that I have learnt help me with symptoms. Listening to rain sounds helps me to get the attention away from the Tinnitus. A hot water bottle helps with pain. Talking with others often helps to reduce symptoms for a little while. It is really important to have a social network that understands and helps you (although I know this is often out of your control).
Accepting myself
Another point that sounds simple, but is hard to grasp mentally, is that I am worth more than my symptoms, even if it doesn’t feel that way at the moment. It’s easy to talk yourself down and see yourself as a worse person because of your symptoms. I know this isn’t true, but I still have to make an effort not to fall into these thought patterns when the symptoms are severe and there is little I can do.
I try now to accept the symptoms. I am not so focused now on trying to work out why I have symptoms. I just try to get on with my life and still try to do things I like. This is a balance however that can be difficult to get right. I try to listen to the body and understand what it needs from me. For example, if I am tired, to take more rest.