mental illness: depression und ME/CFS
TRIGGERWARNING: drug use and s*lf-ha*m
„I don’t want to go back to my old life when I get better. I don’t ever want […] to live my life trying to prove to myself and others that I deserve to be valued, respected and loved.”
Sarah, 31
This interview is about Sarah and about the topic of mental illness.
In 2021, Sarah was first diagnosed with a major depressive episode and an anxiety disorder. Depression is a serious illness in which people fall into an emotional low for several weeks, months or even years. Sufferers are rarely able to free themselves from their depressed mood, listlessness and negative thoughts on their own and often need good medication and psychotherapeutic treatment. In certain circumstances, depression can be hidden behind a veil of illness. This is the case with Sarah, she was diagnosed with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). The syndrome is a neuroimmunological disease that can result in a high degree of physical disability.
Read the interview with Sarah to find out how depression and ME/CFS are related and which treatment is making progress in Sarah’s case:
Tell us something about yourself.
I am Sarah, 31 years old and have been living in Berlin for 10 years. Currently in Berlin-Neukölln. I come from a small town near Leipzig. I recently got my Master’s degree in Public Health and before that I worked as a nurse for many years.
What type of mental illness do you have and how do you perceive its impact?
I was diagnosed with a major depressive episode. September 2021 for the first time. I have also been diagnosed with an anxiety disorder. And I have me/cfs, which is not actually a mental illness, but has a massive emotional component.
Regarding my depression, it can be said that I have felt affected by depression for significantly longer before I was diagnosed with it. I definitely felt affected by it, on the other hand it didn’t really stop me from being a happy person with a fulfilling life, at least not most of the time. There were always particularly difficult episodes in between. In which I was very desperate, very sad, very anxious and felt like I was losing control and sometimes couldn’t get out of bed, but despite that, there were also always a lot of things that gave me support. I have to add that over time it got worse episode by episode.
The effects of me/cfs are significantly more severe on my day to day life. I can no longer go to work. I am worried about my financial situation. I feel like I am slowly disappearing. I can no longer do things I enjoy and see people I love and often only see when they come to visit. I’ve had to write my master’s thesis in bed and cancel an unbelievable number of dates that I was really looking forward to. I am in pain every day and rely on help all the time.
Do you think ME/CFS may have come because you were/are depressed or that the depression is part of ME/CFS?
The question is not easy to answer. I would say that trauma, stress and certain behavioral patterns that I have and that I have in common with many other sufferers have played a role in the development.
Do you remember when the symptoms started?
I am currently doing a lot of research into the origins of my illness and now actually think that the events that caused the illness happened in my early childhood. The first events were probably when I was 2-3 and the things I can consciously remember between the ages of 6 and 12.
My me/cfs symptoms started in 2021 with feeling increasingly more exhausted. Had various infections and mainly noticed my arms were super heavy, like I had cement in them.
I experienced my first depressive episode when I was 20. Whereas in retrospect I have to say that I have always been a sad teenage girl more often.
Were there triggers that triggered the disease or other factors that promoted its progression?
In my childhood, a lot of the problems that were very common in my generation played a role. I often experienced feelings of rejection and being replaced in my childhood and youth. These feelings are still often triggered in me today. They also triggered various beliefs in me, which in turn triggered various behaviors in me, which unfortunately have been causing me a fair amount of stress for a number of years. For example, I have always had the feeling that I myself only deserve appreciation if I accomplish a great deal. To this I must also say that I think that patriarchy, meritocracy and capitalism make me and many others of us sick. Or at least do not contribute to maintaining or growing our mental and physical health.
Was the use of anaesthetics a possible way for you to get out of the disease? Or are drugs a possible factor that led to your illness?
Drugs and anaesthetics have played a role in my case. In my case, they are not the cause of my illnesses. In my opinion, they rarely are in general. Of course, drugs don’t make things easier. In my case, they have contributed to me running away from my symptoms longer, rather than constructively engaging with my healing journey.
Were/are there other things/behaviors/activities you lost yourself in during your illness?
I’ve been watching a lot of trash TV for a while because I didn’t have a real idea what I could do despite the exhaustion. Now I’ve seen almost everything that interests me. When I am very exhausted, I sometimes sit in the shower for a very long time. On the bad days this is also the only place I make it to when I want to get out of bed.
Are you or have you been in therapy and if so, how helpful is/was it for you?
I am currently doing a coaching program aimed at emotional healing for me/cfs sufferers. And occasionally see a coach in this context. I actually came to this because I have very difficult conditions in finding a therapy place, as it is very hard where I live and I had some stupid experiences in this context. However, I am now very happy with the coaching program because it is getting me to go very deep into my traumas, my behaviors and my pain and picking me up where I needed to be picked up with my exhaustion syndrome.
I go to different support groups, which is something very empowering because as a me/cfs affected person you don’t get a lot of help within the system otherwise and you get a lot of good advice and just see that you are not alone.
Apart from that I have been very lucky because I got into the intervention group in a study where a rehab concept for me/cfs affected people is being tested and therefore I will soon go to a 4-5 week rehab measure where the different activities are adapted to my energy level.
Were you prescribed any medications? If so, what effect did they have on you?
Yes, I was prescribed an antidepressant. Unfortunately, it did not help me. I tried another one and didn’t tolerate it. Then I gave up on the medication thing, which I thought was a shame for quite a while, because I know a lot of people for whom medication helps very well. In the meantime I have made peace with it because I now perceive it as a chance to get to the root of my problems, to deal with my traumas and to work on my harmful behavior patterns.
Describe your daily life before and during your illness. What influence does the disease have on your quality of life?
Before I got severe symptoms of exhaustion, I worked and studied a lot. I was also partying a bit much. It wasn’t that I disliked doing all that. These things already fulfilled me. Still, I wouldn’t do it that way now. I put myself under a lot of pressure with work and learning and defined my worth by it. Thus, the disease has a big impact on me because I can’t do the things I defined myself by now. I’m slowly developing new interests now that don’t put so much pressure on me. It’s good for me, but it’s a long process.
Have you thought about self-harm?
Yes, all the time, but I let it go and later I’m happy about it. And then the next time I try to remember that I was happy about not doing it.
Are there people who support you in your life/everyday dealing with the disease? If they do, how do they help you?
Yes, my family and friends are extremely supportive. They come to visit me, they listen to me. They help me shop and sometimes drive me to appointments. They don’t treat me as a victim, which helps me maintain a certain level of normalcy. I also find it particularly nice that they give me the opportunity to listen to their problems, to sympathize and to give advice. Because that way I feel like I have something to give despite the fact that I’m doing the way I’m doing. The biggest support is my mom. She has helped me a thousand times with the household, driven me to different appointments and is a big support for me financially, because there are no therapies for me/cfs that are covered by health insurance. Therefore, you have to try many different things that are very expensive. I would be completely lost without her.
Do you have any advice for people in a similar situation?
Even if you are desperate and life seems unbearable: Nothing remains as it is. You are loved and if you can’t fight for yourself, then try to fight for those who love you. You can always try first and then decide later to give up.
If you can think of any other things you would like to say, please feel free to share them.
To all people who have relatives or friends with chronic diseases: Check in with them every now and then and ask if you can support them or if they just want to talk. It is a good feeling when you realize that you are not forgotten.
If you feel like Sarah or you felt addressed by some passages of this text, then have a look at this webistes: