Illustration photo by Flickr.
I've decided that it's time. After more or less 18 years of not talking about it, I need to come out of the closet and say it out loud: I suffer from PCS.
Never heard about it? I'm not surprised. I hadn't heard about it, either, until a doctor diagnosed me with it back in 2002 (I think that's when it was). I'd known for a long time (more than a year) that there was something wrong with me, and I'd been telling my GP (General Practitioner Doctor) my theory about it, but I felt that he didn't believe me. In fact: Many doctors know very little about this, and my GP at the time obviously didn't.
I'm not writing this blog post to bring shame upon anyone, but after my own personal experiences with PCS, I think it's time to shine some light upon this invisible injury, which is more common than you'd think, and which a lot of people suffer from, especially many athletes. But people with PCS often keep silent about their illness because they feel they're not being taken seriously or even believed. That's why I've kept silent about it, too. That doesn't make it go away, though.
So let me tell you my story:
Back in March 2001, I had applied for a vacant job at the local municipality office after having worked from home for 7 years. It was a part-time job (60 %).
Just before I was going to start that job, I had an accident. I hit my head very hard against a bookshelf in my son's room one day, and I had a constant headache for 2 days. I didn't call any doctor, though, because I didn't want to bother anyone or "complain" (guess I'm a typical woman!) and I thought it would pass. So I started that job, despite the headache, because I thought if I started off with a sick-leave, I'd lose the job right away, so I tried to hang in there as best I could.
Only the pain didn't pass. Well, it got better, but I was dizzy and also had other strange symptoms, like feeling completely exhausted just by walking up one flight of stairs, and I had migraine with "aura" almost every day, - so after a couple of days I finally went to see a doctor (not my usual GP). He examined me, but couldn't find anything wrong. He did, however, say that I should probably take it easy for a few days and asked me if I needed a sick note. I was reluctant at first and said "no, thank you", - but it didn't take long before I had to go back to the doctor and ask him to write that sick note anyways, and so I was on sick-leave for 2 weeks.
That was just the beginning.
Let me just cut a long story short and say that I was in and out of that doctor's office more times than I care to remember, and I felt more and more like I was regarded a hypochondriac each time I went there, because the doctor couldn't find any physical evidence of my illness. I felt more and more that he didn't quite believe that there was anything wrong with me at all, even though I'd told him about what happened when I hit my head and I'd described my symptoms and told him over and over again that they had to be connected to my injury, because it all started then and I'd never had any such symptoms in all my life before that.
It wasn't until months later that I finally got diagnosed. My GP had sent me to the local hospital to have some tests done over a couple of days, which meant that I had to be admitted, and during that hospital stay, after having been interviewed by the doctors and told them my story, one of the doctors came to me one day and gave me a Medical Journal with an article that he wanted me to read. "See if this describes what you're going through..." he said, as he handed it over to me.
Post Concussion Syndrome
The article turned out to be about something I'd never heard about before: Post Concussion Syndrome, but which I immediately recognized. (I won't explain in detail here, but you can read all about PCS here). When I read the article, everything fell into place. It was as if it was written about me personally. And the doctor told me that he'd had a similar experience as mine when he was younger. He'd fallen into a river and hit his head on a rock, and he got a severe concussion and suffered from it for many years afterwards. Post Concussion Syndrome really means "long-time effect from a severe concussion", - or to quote the Concussion Legacy Foundation: "Post-Concussion Syndrome, or PCS, is the persistence of concussion symptoms beyond the normal course of recovery" - and there was really no doubt: That was exactly what I was going through.
It was such a relief to finally meet someone who understood what I was struggling with, and who could give me some answers! I asked the doctor if this was something I would have to struggle with for the rest of my life, or if there was anything at all I could do to heal myself. He said there was a chance that I could get well eventually, but that I most likely would have the symptoms for many years to come. He advised me to read more about it on the Internet when I got home from the hospital, and said that I should try to avoid all kinds of stress, mental and physical, and that I would probably need to rest a lot. If I managed to do that, he had good hopes for me, but couldn't make any promises.
It turned out that I was in one of the categories of people who were most likely to develop PCS and have symptoms for a long period of time. I'm a woman, I was in my 40s when I got the injury, and I'd had several head injuries and concussions as a child. For your information, I had at least 3 incidences of concussion in my childhood, - on one occasion I had to stay home from school for a whole week. I also had what they call "petit mal" epilepsy for a few years in my childhood, where I had "black-outs" and didn't know what was going on around me. Luckily, I "grew out of" that, but all these things probably made me especially vulnerable to PCS, and is probably part of the reason why I still have it.
Symptoms of PCS
If you suffer from symptoms that no doctor has managed to diagnose, maybe you have PCS, too. These are some of the symptoms:
Headache / Migraine, often with "aura" (eyesight disturbances)
Flushing of cheeks
Temperature control issues
Visual convergence insufficiency
Shortness of breath
Frequent toilet visits / need to urinate
Increased intolerance with alcohol
I've suffered from most of these symptoms, especially during the first few years. Some still linger on, but I'm better. When I'm allowed to set my own agenda, I can live more or less like normal, but if I have to be in an ordinary job, I seldom last long before I'm back on a sick-leave.
How serious is PCS?
Well, to quote the Concussion Legacy Foundation:
"Post-Concussion Syndrome can be extremely disruptive to a patient’s life. In addition to having to constantly manage concussion symptoms, which can intensify with normal activity, long-term PCS patients often have to restructure their lives to avoid activities and situations that cause symptoms to worsen. For children, this can mean extended absences from school and removal from sports and extra-curricular activities. In severe cases, it may be necessary for a child to repeat a grade. In adults, PCS can seriously impact a patients’ personal and professional life, interfere with family life, as well as the ability to focus, communicate, and be effective at work."
I can confirm that. I've had to restructure my life somewhat significantly after I got PCS, and the fact that this is invisible to everyone else and therefore something other people seem to find hard to accept even exists in my life and is a real problem, - I've learned to keep my mouth shut about it and I just try to live my life as close to normal as possible. The fact that many doctors know so extremely little about it, too, doesn't make it easier. It's hard to convince others to believe in something they can't see. That's why I've sometimes considered buying a pair of crutches or putting a bandage around my head, - like so many other PCS patients. I quote: "PCS is an invisible injury, and many patients often wish they had a more visible injury requiring crutches or a cast so that they would receive more respect" (quoted from the Concussion Legacy Foundation's website).
No specific treatment, but there are options
There's no medical cure for PCS, as you can see if you read more about it (here), and no particular physical treatment. But there are some options, depending on what your exact symptoms are, and there are things you can do to try and keep it from getting worse. I've tried to follow the advise I got from the doctor who diagnosed me. Basically, I've had to try to avoid stress (which has been extremely difficult, since I've had to work, and life has presented a lot of challenges along the way...). One of the symptoms of PCS is fatigue, so there's been a lot of things I always enjoyed doing before, that I just stopped doing for many years because I felt completely exhausted. Dizziness and migraine with "aura" (sight-disturbances) also made me sort of afraid of even going for a walk alone, - something I used to enjoy earlier.
Less physical activity, combined with a lot of stress, resulted in me putting on almost 20 kilos of weight. For a person who's been lean and strong and never heavier than 60 kilos all my life up until that point, putting on that much weight and losing my slim figure was really depressing. I felt less attractive, and the fact that I felt constantly tired and didn't have the energy to do things together with my kids the way I used to, also made me feel like a "bad Mom". The effect PCS had on my relationship with my husband, is also part of the picture. I didn't have the energy I used to have before, neither to be physical intimate nor to go hiking in the mountains with him and that was bad enough, but I even struggled with doing household chores like cleaning floors, because I got so exhausted, so my husband had to do more of these things now. But the most frustrating thing was the feeling of not being taken seriously with my illness and the actual challenges I had because of it. As time went by, I felt that both my husband and other people didn't quite believe that PCS was real, and that I was just making excuses to avoid working or doing things I didn't want to do. It made me really sad and frustrated.
I had to change my life
It came to a point where I just couldn't live like that anymore. I wanted my life back! And I understood more and more that I had to stop putting everybody else first and start living more in alignment with who I am and what I need. I had to start looking after me for a change.
So after years of struggling my lonely battle with PCS, - after being on sick-leave long-term, then going through a rehabilitation period where I managed to get some financial support to educate myself as an interior decorator, then going through a work-practice period, then starting my own creative business which I kept going for 2 years while at the same time working as a substitute teacher.... (!) (you may breathe now!) - yes, I did all of this despite the fact that I knew that I had PCS and really shouldn't be having all that stress in my life. But I was the only one who really understood that, and I felt that nobody believed me. So I kept quiet and kept going. But after some years, I realized that I had to make some big changes in my life. I just couldn't keep going the way I did. I was exhausted, physically and mentally. My marriage wasn't working well. I felt that - apart from the constant love and support from my wonderful kids - I was completely alone with my struggles, and had no support. So what should I do?
To cut a long story short: After some time where I really tried to make the best out of the situation and I made a serious effort to think positive thoughts and try to make everything work (my health, my work situation, my marriage...), I realized I couldn't keep it up. So I made some tough decisions and sort of started my life from scratch again. Without going into any details right here, let me just say that I did what was necessary for me at that point, and part of that was divorcing my husband and moving to a new town.
I struggled for quite a few years financially, with only part-time jobs or vacancies available and also a long period of unemployment, - but I found ways to cope and never gave up on my dreams of a better life for myself. I worked for several years as a coach for unemployed people, and then, 4 years ago, I got a job as a social worker for refugees, which was a permanent job.
I was happy to get that job after quite a few years of only part-time jobs available, because I needed it to get a more balanced economy after the divorce, - but I've always known that being someone's employee was not what I wanted to do for the rest of my life. I wanted to be my own boss, and I did everything in my power to make that happen. Why? Because I was struggling with my health, and I knew that having to rely on an employer or maybe even social security to keep my head above water, was not something I could live with much longer. It would only make my PCS worse. I just had to find a better way to support myself.
I'm still struggling with my health, so I really need to make this online business work. It's early days yet, but I believe I'll be fine. I trust in myself and in God (or the Universe)
How can you help someone with PCS?
Again, I'd like to share a quote from the Concussion Legacy Foundation's website:
"Family and friends of a patient suffering from PCS can help by recognizing that PCS is a serious condition, and being understanding and supportive if the patient needs to socialize differently. A person with PCS may no longer be able to handle the noise or crowds of a party, but they still need to spend social time with friends, so offer a movie night or just pay them a visit and talk. Other situations may bring on more severe symptoms, so expect someone with PCS to sometimes remove themselves from a loud, bright, crowded, or otherwise over-stimulating situation. Instead of questioning if their headache is really that bad, a supportive friend will offer encouragement and remind their friend that they’ll be ready to continue their activity when they’re feeling better."
I realize that I probably should've informed work-colleagues and friends earlier about my invisible injury and the challenges I have on a regular basis because of it. But bad experiences when doing so in the past, has kept me from it. I'm tired of being mistrusted, misunderstood and not taken seriously when I talk about what I'm struggling with, like insomnia, fatigue, noise- and light-sensitivity, - among many other things. And I don't really want to focus on it, either. I want to focus on getting my life back to normal and being well. No one wants to listen to someone who always talks about illness and problems, and I don't, either. So I don't want to be that person, and I try to avoid it. But when people notice that I withdraw from social gatherings, at work or in private, they might think that I don't want to spend time with them, so I guess some explanations are in order.
Well, at least I've come out of the closet with this blog post, and I want to contribute to more awareness around this topic, but not in a "problem-focused" way. I'm writing this from a positive perspective, to (hopefully) help others who might suffer from PCS without knowing that that's what it is, and to help them and their immediate circle of people understand better what's going on and maybe find ways to improve their life.
If you suffer from PCS, or suspect that you might do, you're more than welcome to contact me. Leave a comment below or send me a message through my "Contact Me" form, and I'll answer back A.S.A.P. And if you know of someone else who might want to read this blog-post, please share. Thank you for your time!