It was a Monday. 4 days earlier I had gotten the erysipelas infection in my legs yet again and had called in sick at work. I had hoped I would get well enough during the weekend to show up for work this Monday, but my body was still so haunted by the infection that I did not dare go to work. I was worried. Several times before I had showed up at work just the day after – or on the actual day – getting the infection. Despite having a high fever and excruciating pain in my legs. But this time there was something telling me that this approach would be a bad idea. So instead I had asked my boss’ permission to work from home, lying in bed with the computer.
I opened up my laptop and typed in the code necessary to access my work files. My heart suddenly started pumping like crazy. It felt like I had difficulty breathing. I could not cope with the idea of doing anything work-related. I got scared. At some point I just started crying – without knowing the exact reason why. I cried and cried. It felt like the walls inside my body broke down and that my brain had thought its last thought. I did not know what to do.
I ended up calling a close friend at work, explaining her what was happening and that I did not understand anything. She calmed me down and helped me find a phone number to a hotline, that people experiencing challenges relating to our work place, can call. I immediately dialled the number on my phone and got through to a nice woman. She asked me why I was calling and through all my tears I tried to explain what was happening – even though I did not understand any of it myself. She then referred me to a psychologist connected to the hotline program. Her conclusion was clear: I was suffering from stress.
I have friends close to me who has suffered from stress but I never understood the magnitude of this “illness” until I was caught in it myself. It was without doubt the scariest thing I have ever been through so far – and yes, even more scary than cancer. With cancer you are told some odds about the state your body is in; you are told that you will go through a certain amount of chemo and radiation therapy; you are told whether the doctors expect you to get through it or not and with which consequences. How your brain and body reacts to being under too much pressure – when your entire system fails because of stress – that is nothing like anything else I’ve tried in my life. And what it did in relation to my lymphedema and the infections in my lymphedema limbs was incomprehensible.
That is why I have chosen to write this article. And to be honest. A lot of people who have not experienced the devastation of stress themselves have difficulty understanding why you cannot just “snap out of it”. And I understand them; I never understood the “concept of stress” before I was trapped in it myself. And I especially did not fully understand what it did to my body, my lymphedema and my health. With this article I am therefore trying to shed a bit a light on the subject of my experience with stress, put a bit of information on the table in relation to stress and lymphedema, tell about the direct link between stress and erysipelas infections in my legs and also pass on my renewed take on especially work life after having been battling stress.
Can you imagine?
Imagine your brain collapsing. Your body breaking down. You not even being able to cope with the thought of writing a text message or think about what you want for dinner. Not even if somebody else is doing the actually work for you and writing the text or doing the groceries and preparing the meal. Can you imagine being in such a dark place that you fear there is no way out? That you are stuck in a dark tunnel, not being able to use your head for anything and not being able to jump into new exciting projects with the usual enthusiasm – or even thinking about new projects?
Everybody reacts differently on being under too much pressure for too long. And if you do not know what to look for it is extremely hard to know what is coming. I myself did not see any of the signals of danger, because I had no knowledge of these reactions in my mind and body being that problematic. I did not realize that something was wrong the day I stood in the super market having to use my credit card to pay and not being able to remember my credit card code. Even though it is literally the easiest code in the world and that I have used it thousands and thousands of times before. I did not realize there was a connection between me suffering from this intense pain in my forehead for several weeks, even when I was completely relaxed during yoga class, and the fact that my heart was pounding so hard, so fast every day, all day long. Or that I could not sleep; I lied awake for hours and hours every night, desperately wanting to sleep, but I couldn’t. It seemed like it had become impossible to rest. And I was so tired. I was so tired it felt like I needed a year of sleep before being able to function again. And when I went to work every day I could not focus on anything. I tried and tried to focus, even on the smallest of work related tasks, but it was impossible. I could barely put a few sentences together. And being creative, getting new ideas on writing projects, something I have always been doing, that was no longer possible. I got no new ideas. I could not write.
When I first realized what was happening, I thought to myself that it would be over in a couple of weeks and then I could go back to work. But when I took a step back from work, stayed at home and for once in more than 6 years let myself take a deep breath and relax, I realized how badly stress had clawed on to my body and mind. It was so frightening. I could never begin to explain how scared I was of all the things that were happening. After having been staying home sick from work a couple of days, a couple of weeks and a couple of months, I discovered that my body was so broken down that the symptoms were not going to disappear any time soon. My heart rate was constantly on an increased level, I had a constant aching in my forehead and I could not lie down on the couch relaxing for a few minutes without getting so uncomfortably recklessness that I immediately had to throw myself into some kind of practical project not to get scared of how my own body and mind were acting. When I tried lying down in my compression pump, which I had lied in hundreds of times, I suddenly got what could probably only be described as minor anxiety attacks.
What was most shocking to me was that I could not simply decide not to suffer from stress anymore. I was stuck. I was stuck in this awful place where I could not control anything. My body and mind were out of my own reach.
Being under too much of a pressure for too long does not have to come as far as just described. In my case, I realized very late in the process that something was wrong. Stress had built up in my body and mind over time in such a degree that it took several months of rest and mental work before I was able to go back to work and resuming a – relatively – normal life. However, the impact of having suffered from severe stress will in many cases stay with you for months and months even after you have resumed your work life and social life. To draw a parallel; when I had to go through chemotherapy I was told that I should expect my memory to be affected. And it was. It felt like my mind was wiped and it took me 6-7 months to feel like I was able to remember common everyday and study-related things in a relatively normal way again. But this time, after having suffered from stress, I still – after almost a year – will not be able to remember the three digits you just told me 5 minutes ago. I can be speaking to a friend on the phone and get interrupted and therefore promise him or her to call back in 30 seconds, and hours later they will text me and ask why I did not call back as promised. So many pieces of the daily information puzzle seems to fall out of my head and I have to accept that it will be a very long time before I will be able to trust my memory completely again. That is how destructive stress is on your brain. It is in every way mind-blowing.
Before going on, it is relevant to put down a few facts about stress. Stress is a natural biological mechanism, which is also quite important. It is a mechanism that is supposed to help us when we encounter critical situations and the mechanism is sometimes referred to as the “fight or flight-response”. One of my friends finds this subject incredibly interesting and has read a lot on literature about it. When I talk about feeling stressed, she always makes a reference to when humans were living in caves. She says that humans at that time had to hunt to find food and in that relation stress hormones were essential; through evolution it has helped us to survive. The problem is, she says, that we no longer hunt to find food. Instead we are hunted ourselves through higher demands in relations to our skills and what we are supposed to get out of life. Here, my friend says very wisely, evolution has failed us: the brain does understand our new situation, but the body does not. And therefore the body still keeps on pumping us up with stress hormones.
When you are under a lot of pressure, the levels of cortisol and adrenalin in your body will rise. This will normally have a good effect on your body and make you capable of “fighting” through a situation, but if you throughout a longer period of time have high levels of adrenalin and cortisol, the helpful effect on your body will stop and the immune system will be weakened.
Stress is a state of pressure, not an actual illness. But stress can cause actual illnesses if the body is under too much pressure for longer periods.
People react differently on being under high pressure for a longer period and eventually developing stress. Common symptoms are troubles remembering, sleeplessness and giddiness.
But the big question is: What effect does stress have on your lymphedema?
Stress and lymphedema
I was shocked. I did a quick Google search to see what kind of scientific articles I could find on stress and lymphedema. And I found practically nothing on the subject, neither in Danish or English. To me, that seems absurd, because in my case stress has turned out to be an extremely dominant subject in relation to my lymphedema.
For me there is no doubt that stress can impact negatively on your lymphedema. And not only negatively, but also permanently damaging. This has been clear to me from the very first months I was diagnosed with lymphedema; that even smaller amounts of everyday pressure can have a huge impact. I was therefore left speechless when I discovered that this subject does not seem to get much attention. I have been told a few times by some of my physiotherapists that stress might affect my lymphedema and I have known it by instinct – and later on in a very direct manner by experience – but that is about it. It seems strange to me that there has not been done more research on this matter. I believe it could have an enormous effect on the well-being for so many lymphedema patients if they were better informed on the effects of stress when having lymphedema.
Being under a lot of pressure and being emotionally stressed sets your body in “alarm mode”. It would only be natural that a state like that would influence on your body as a whole – and with a lymphatic system already being under pressure, it does seem logical that putting further pressure on the body would make it even more difficult for the lymphatic system to keep up.
In researching for this article I therefore turned to the lymphedema specialists I have met throughout the years. There might not be published medicals articles on the subject of stress and lymphedema, but I was convinced that the professionals – working with lymphedema patients every day – had an opinion on this.
A few weeks back I therefore contacted some of the Danish specialists within the area of lymphedema. I told them I was writing an article on the subject of stress and lymphedema and that I would very much like to know what their experience was within this field. And I would especially like to get an answer to the question if they – and medical specialists within this field – thought that stress could worsen a person’s lymphedema.
A few days later I got a reply to my email. Firstly, they answered that they were not surprised that I had had difficulty finding medical studies relating to this subject. Unfortunately, they wrote, you do not know much about what affects/worsens the lymphedema. But the experience of the patients was quite clear: The patients do experience that their lymphedema is worsened when they are under a lot of pressure. However, the specialists said, the problem is that they do not know exactly how being under pressure or suffering from stress worsens the lymphedema; if it is pain, the feeling of heavier lymphedema limbs, swelling or other symptoms. In short, what the worsening consists of exactly.
I also asked my former lymphedema therapist, working at one of the Danish hospitals, who specializes within lymphedema patients. When I asked her if she thought being under a lot of pressure can influence your lymphedema, she replied immediately that she thought that to be the case: “I remember one clear example on this; a patient I treated years ago. When she came to us, wanting to get treatment for beginning lymphedema, she was going through a divorce. This divorce was very stressful for her and we actually had to postpone giving her treatment, such as bandaging, because the stress impacting her made it impossible to work with her lymphedema. She could not get the treatment until her divorce was finalized and her stress levels decreased. It also makes good sense that stress should be able to impact lymphedema negatively. If you look at the medical explanations made by scientists on how stress impact your body for example by increasing the level of stress hormones in your body, affecting your lymphatic system, it makes sense that a lymphatic system already not working properly because of lymphedema would get worsened.”
When I am under a lot of pressure, my legs react pretty much immediately. They swell way beyond what my compression stockings can hold down. Once I was feeling a lot of anxiety because I was trying to get back in the game at law school after having been away for 6 months because of cancer treatment and the amount of fear in my body was at a maximum. I struggled finding my way back after having been sick and the mental pressure was devastating. The day before the first exam “back in the game”, I went down to the grocery store and my feet were hurting badly when I walked. I did not normally suffer from swelling in my feet, though. This day I was wearing ballerinas and when I looked down at my feet, I was met with this unsettling sight: My feet had swollen in a degree where the feet had “outgrown” the ballerina shoes and my feet were practically double of their normal size.
The very second the exam was done, my feet went back to normal. In the years I have had lymphedema, my legs have reacted severely under being under pressure, but I have always been able to get my legs “back in line” by putting an end to the stress factors. But when I broke down with severe stress symptoms in the early spring of 2017, it suddenly got a lot more complicated.
The stress that I had been under for such a long period – and which it took 6 months sick leave to recover from – had grabbed on to my lymphedema like a leach. My lymphedema worsened to a level I had never experienced before and the tissue seemed to be getting harder and harder no matter what I tried to better the situation. No resting or exercising was sufficient to get my legs back to their normal state of swelling.
My legs did not become “manageable” until I had worked through all the mental stress, I was under. And I had to accept that my legs were a catastrophe those months even though I – physically – did all the right things to better my lymphedema. That was to me a clear sign that my lymphedema is directly linked to my mental state – and that stress has a much bigger influence on the state of your lymphedema than you realize.
But in my case the stress did not only cause a worsening of my lymphedema. The stress had much graver consequences.
Can stress cause erysipelas infections?
The first time I got the erysipelas infection in my legs, I was under an extreme amount of mental pressure. The mental reaction on my entire cancer experience had started to kick in and I had chosen to cope with it by working 5 study-related jobs at once, leaving very little time to relax. And that did not play well with a mind that suddenly reacted strongly on all the things that had been happening a few months earlier; being told I had cancer, that I had to have my uterus removed and never being able to bear kids of my own, that I could not go on as usual in studying law which I absolutely loved. With me being hospitalized because of the infection, I only got further behind with everything, especially studying for the exams I had to skip six months earlier because of cancer treatment. So the pressure on me only got bigger and when I started to feel a great deal of anxiety, like a big black cloud hanging over my head, because I could not handle the idea of the upcoming exam, bang! Then the infection hit me.
This was in 2011. I already after the first two times of having the infection had a distinct feeling that the infections was connected to the pressure I had been under. And this pattern only became more clear throughout the years. The infection came the second I was under a lot of mental pressure and stress, like clockwork.
I discussed this with tens and tens of doctors attending my case throughout the years – non of them believed me. It was so unbelievably frustrating; like I was screaming from the inside of glass house, but no one chose to see or hear me. This despite the fact that I was actually capable of showing a precise pattern of when the infection would break out in my body. However, every doctor told me the same thing: The erysipelas infection in my lymphedema damaged area does not relate to the stress levels in my body; the infection is purely a matter of some kind of bacteria getting under my skin and causing the infection.
But this did not seem right to me. It did not make sense. Because the same thing happened again and again (and has at the time of writing this article happened almost 30 times): Every time I was under extreme pressure, I got the infection. One of the clearest examples of this was in 2016 when I had just finished law school. I had not had the infection in about 6 months ahead of that; I had suddenly found a rhythm in life again and I felt like I was moving forward after the whole cancer period. I could finally hand in my master thesis and a few days later I started my new job as a lawyer. It is always stressful to begin in a new position, no doubt about that. But I really struggled the first two days. The second day I cried all the way home and all the insecurity I had felt years before, when I had to resume studying law after having been sick, suddenly found its way back to me. When I got home, I simply broke down and I was so scared that I was not able to go through with taking this job. My body went to “alarm mode” and I could barely sleep that night. And the next morning I woke up with the infection. To me it was very clear; I had felt safe the foregoing 6 months and had not been under very much stress, but the second everything got heated and the stress levels in my body exploded, the infection came back as the steady companion it was.
I am not a doctor. I have not studied medicine for 6 years. But I know my own body very well. I know what will make it work well and what will break it. And I have my own hypothesis relating to stress and erysipelas infections in a limb with lymphedema: I believe that increased stress levels in our body can weaken the immune system to such an extent that it makes the body much more vulnerable to getting an infection – and that it might even trigger the outburst of an infection based on the bacteria in your skin.
In 2017 I finally met a doctor who believed me. And the best thing of it all is that he is actually a specialist within the medical area of lymphedema. When I explained to him that I truly believed that an extreme amount of stress in my body could trigger the infection, he said: “Well, that does not seem unlightly. I once spoke to a specialist in skin diseases and he said that so far research showed that stress can trigger 60 % of all skin diseases. And that is only the cases we know of. So it might be the case that stress can trigger erysipelas infections as well.”
I was ecstatic. Finally a who doctor believed me and it was not just any doctor; it was a doctor specialized within the field of lymphedema.
The connection between stress and the erysipelas infection also became quite clear to this specialist when he had me under his wings during the spring of 2017.
As a result of me constantly suffering from the infection, he had spoken to English specialists within the area of lymphedema on possible treatments. As I have written more about in the articles on the erysipelas infection here, the English specialists told my doctors about a preventive treatment that they had amazingly good results with. The majority of English patients that had gone through this treatment, either stopped completely getting the infections or only had them once or twice as year following the treatment. This treatment requires you to show up every day at the hospital for 3 weeks to get penicillin intravenously injected. Unfortunately, it was not possible to give me the exact same treatment because my veins are too ruined from chemo. So instead of showing up at the hospital to get medication every day, I underwent the treatment 3 times a week. That should still have a sufficient effect to at least reduce the number of infections yearly. And my legs reacted well to the treatment. I had suffered from a constant “red-ish” skin on my thigh the foregoing year because of all the infections, but my skin suddenly began to look normal and wonderfully pale again (yep, being pale is a positive thing for once). During the weeks where I underwent treatment, I was on sick-leave from work. I had been on sick leave for about 1 month because of the severe stress symptoms and I was desperate to go back to work. At that point I did not get how sick my body and mind actually was, so I only focused on not letting my boss down by being away for too long. A few weeks into my treatment at the hospital I therefore went back to work, just a few hours. And I could not cope. I could not even open the computer without getting what felt like an anxiety attack. My heart pounded like it was about to jump out of my chest. I could not focus one bit. I could not do anything. And when I showed up at the hospital the following day, the stress I had been under for those few hours showing up at work, was clear as day: The infection had flared up again and my thigh was once again covered by the distinct red rash. As a result of this the doctors prolonged the treatment to make sure the infection was properly knocked down and I prolonged my sick-leave from work, not going back to work before the treatment was done.
The results of the treatment were promising and the specialist at the hospital was optimistic. I too was optimistic and I – still not properly getting the seriousness of the stress symptoms – chose to go back to work, just for 3 hours, as soon as the treatment was done. On this Tuesday, after spending only 3 hours at work and not even being under very much mental pressure, I went home with a high fever and a new erysipelas infection in my body. At this point it became evident to both me and the doctors: When I was put under a lot of pressure, the infection would break out, even despite of having been in a hardcore preventive treatment for weeks and weeks ahead of this.
I later looked into the subject of stress and skin diseases. It turns out that – as in stated in the article “The Role of Psychological Stress in Skin Disease” by Arash Kimyai-Asadi and Adil Usman – that a great number of case reports and studies “suggest that psychological stress may have a role in the onset or exacerbation of a variety of skin diseases. Usman and Kimyai-Asadi end up concluding that “there is evidence linking psychological stress to exacerbation of certain skin diseases.” However, the problem is that it can be difficult to interpret the evidence because of the “difficulty of defining and quantifying psychological stress as well as the questions regarding the etiologic significance of neuroimmunologic findings in skin diseases.”
At this point it seems to be clearly acknowledged that stress and emotional distress contributes to either an outbreak or aggravation of the skin disease psoriasis. Evidence seems to be pointing in the same direction with other skin diseases as well.
Because it is difficult to measure psychological stress it is harder to prove a direct link between stress and skin diseases. However, I do not find this to be sufficient grounds to not look deeper in to the subject. I therefore hope that doctors at some point will get a bigger interest in further researching this subject.
But what now? After being confirmed by the lymphedema specialist that I properly was not as crazy as all the doctors had convinced me, I realized that if it was the case that stress could both worsen my lymphedema and cause infections then I had to change my whole way of thinking.
Earlier, when I was constantly told that being under a lot of pressure could not be harmful in the way I felt it could (and I reluctantly tried convincing myself of that being true), I had no reason to change anything about my way of living. But now I had confirmation that I could actually be right about the connection between stress and infections, I would have to change my mind-set completely! I would have to get rid of all my inexpedient ways of thinking in an attempt to reduce the risk of mentally getting under too much pressure. And I would have to accept a few, but to me very intrusive, restrictions in relation to my work life.
A change of mind-set
I was on sick-leave for 6 months. Time was the doctor and I was the patient. In the beginning I focused on getting my body back on track and getting rid of the physical symptoms that my body was showing as a sign of suffering from stress, such as sleeplessness and headaches. When the physical symptoms was minimized to a less invalidating degree, I began focusing on my ways of thinking. This is not done within a few months; it will probably take me years before I have truly changed my thinking patterns. But at that point I considered it great process to just be able to pin-point the ways of thinking that were not healthy for me – and could create increased stress levels and thereby enhance the swelling of my legs and possibly causing infections.
I began working on my tendency to always expect the worst possible outcome of a situation which was a huge stress factor for me (you can read more about this in the article “Living in constant fear”). And I began working on accepting the fact that I might – at this point in life – not be able to go where I had always dreamt of going professionally – at least not as long as I did not cope better in a stressful work environment. This last thing meant accepting that I could not work as a lawyer in a work place where I would have to put in 50-60 hours a week, working late at night on an “emergency case” and being constantly put under mental pressure by working under extreme deadlines. I had to accept that I had to prioritize doing the things that my body, and especially my legs, needed, like doing yoga several times a week, taking mental breaks by meditation or similar activities and making sure to have the time to relax a bit every day.
I have never been good with accepting limitations, especially in relation to my professional dreams. I did not accept limitations when I was going through chemo and radiation therapy and therefore just kept on working and studying as usual – and these 6 years after the cancer diagnosis, I did not accept limitations as a result of me now dealing with lymphedema. But suddenly experiencing how much I damaged both my physical and mental health but closing my eyes to my body’s needs, I got scared. It was no longer a question of whether I wanted to accept limitation; it was a question of me accepting them or ruining myself completely.
During the following months I changed my view on many things. It all built up to creating a well-functioning way of life which in separate parts is described in many of the articles on this website; prioritizing time for the necessary exercise, clearing my head, finding the proper work-life balance and staying true to who I am.
It should be said that people suffer from stress for very different reasons. And it rarely only relates to the simple equation of having too great a work load and not being able to keep up. It is often a matter of several things clashing together; getting divorced, becoming seriously ill, worrying too much about the assignments at work, feeling lonely, financial problems and so on and so on.
Stress is not simple and dealing with it is anything but simple. But when we realize what damaging effect it can have on our body, including one’s lymphedema, it is important to act on it. To be aware of our own ways of thinking and try to deal with the situation at hand; not just ignore it and not accept it, like I did myself, until your body forces you down to the ground.
I truly hope that science at some point will get a greater focus on stress – and not diminish it to being a question of whether you are mentally strong or weak. And I hope that the subject of stress and lymphedema will be discussed much further in the future, because a deeper insight into that will be lightly to create an even stronger platform for lymphedema patients getting better through life.
At this point I can only pass on my own experiences with being under too much pressure while having lymphedema. Even though it is not much, I still hope that it will make others aware that there might be a connection between stress and a worsened lymphedema – and that we have to take great care of our mind to be able to take great care of our lymphedema.