Living in constant fear

When I wake in the morning, I never take a look at my legs as the first thing before I get out of bed. I wait. I wait until I stand in the bathroom and I am about to get ready for the day; then I look down at my left thigh. My left thigh is where the infection in my legs always starts; you will see that red rash spreading all over my skin and feel the heat of the rash when you put your hand on it. I cannot get myself to start my day by checking my leg, so I wait until I am standing in the bathroom. After the shower, when I do self drainage of my legs, I always check how hard the tissue is on that particular day and how swollen my legs are, all in an attempt to keep an eye out if I should be at a higher risk of an infection that day. And when I feel a bit of aching in my thigh when I am running around at work, the thought: “Is it the infection? Is it back?” often comes to mind. When I feel a recurrent pain in the lower part of my stomach, I think to myself: “What if the cancer has come back?”

When you have had health scares or you live under the constant risk of getting for example an erysipelas infection in your lymphedema limb, it is difficult not to feel scared sometimes. And it can be difficult not to focus on what the consequences would be if that fear turns out to be a concrete threat towards your health.

The danger is for you to be so consumed by your fear that it actually contributes to you keep getting sick. I believe that a constant feeling of fear – fear of worsening your lymphedema, fear of getting infections, fear of getting an even more troubled life – can make you more vulnerable. Because a constant fear tabs into your resources like nothing else and makes it harder for your body to defeat the actual threats it is facing.

For almost 5 years fear was a steady companion of mine; I constantly foresaw the worst possible scenarios in my mind and tried to think of possible ways of dealing with them.

At that time I kept getting the erysipelas infections in my legs, worsening and damaging my lymphedema more and more for each infection. It kept coming back and I did not know what to do about it. The strange thing is that when I got the infections, I did not focus much on what it did to my lymphedema – or my health, actually. I focused on the fact that I was so scared of not being able to get the health approval needed for adopting a child one day. That every time I got the infection, it took me 10 steps further away from getting that adoption approval and having a child of my own one day.

However, I did not speak of that fear. I just let it eat me up. And every time the infection came back, I got even more devastated on the inside; thinking that I would be the cause of my future husband and myself never being able to adopt a child.

One day I realized two things. First of all, that I actually had a tendency to foresee the worst possible scenario. Secondly, how much energy I spent on that. I decided to stop thinking like that. It did not do me any good – and it increased my stress levels, which made the risk of getting the infection once again higher. The “funny” thing is that since I stopped focusing on this, foreseeing the worst, I have not had the infection.

I am not saying that we can put an end to all our fears. Some fears are rational and makes sense. As I stated in the beginning of the article, I still have fear in relation to my lymphedema. But I handle those fears instead of simply hiding them away or worse; letting them handle me.


What to do about the fear?

I guess people have very different ideas of and approaches towards handling fear. I can only provide others with my own approach to this subject. Maybe some people with lymphedema will have a need to handle it much differently, which makes good sense; everybody is different and we all have our own ways of dealing with challenges in life.

But here is my approach to it. Maybe a few or several elements can be used by others as well.

  1. I accept that fear is part of my life.
    I believe it to be normal to be afraid once in a while. If you have had cancer in your breast a few years back and you suddenly feel a numbing pain in that breast, it would – in my opinion – only be normal to get the thought: “What if it is back?”I therefore accept that fear will once in a while be part of my life. Facing hard times in life sets a mark – and that is okay.
  2. I accept that I have a legitimate reason to feel fear.In my case, there is a risk that cancer will suddenly reappear in my body. Or that I get a new erysipelas infection in my legs with the potential of worsening my lymphedema even more. Or that I simply do not take good enough care of my legs to prevent my lymphedema from evolving and me getting hard tissue and permanent swelling in some areas of my legs.Yes, there are all these risks and they are legit. And if one of them at some point should turn out to be more than just a risk, I will deal with it then. There is no need – and no point – in constantly worrying about something that might happen, no matter how legit the fear might be. You can cross that bridge when you reach it.
  1. I have made a choice not be controlled by my fear.
    That includes not feeling it every second of my life; you need to accept its presence and then try to think of something else.At this point I rarely actively think about my fear of infections in my legs or damaging my lymphedema. I am of course aware that there are things that I should not do or be careful about doing. But taking your precautions is not the same thing as being controlled by fear. That is a matter of adapting to a new situation, in my case taking great care of my legs and body.
  2. I expect people around me to accept that I have a need to some times pinpointing a concrete fear.For me, the fear gets worse if I do not point it out in a concrete situation. I have a need for saying it out loud that I feel that fear.If my left leg – where my infections always start – is hurting in a peculiar way or if I feel very stressed and I therefore know there is a higher risk of getting the infection, I say it out loud. I do not talk about it for hours; I just have the need to quickly say it in a way of acknowledging its presence and then get on with my day. Should I later that day get the infection, well, that’s just the way it is. Shouldn’t I get it, well, that’s great and I feel relieved for a second or two.People close to me don’t necessarily find this approach helpful or healthy. But I respectfully ask their acceptance of this reaction, because uttering those few words of fear put me at ease and then I do not focus on the fear any longer. Saying “I am a bit concerned if a new infection is on its way”, makes it possible for me to then put the fear aside.

    I would advise others to follow their gut on this. What feels right for YOU? Your friends or family might find it frustrating that you a few times a month utter that you are feeling strange and you have a fear of it being an infection. But they might do not understand these type of challenges that you face having lymphedema – so you will need to try and explain it to them as good as you can. Even if they should not be able to put themselves in your shoes, you will have to explain to them that you have a need for vocalizing your fears once in a while and that you would very much like their support in this.

    With all this being said, I am not advocating that if you feel fear of getting for example an infection in your lymphedema area, you go around focusing and talking about it for hours with everyone around you. I am advocating that it is okay to vocalize your fear for a moment, if that is what you need to be able to put the fear aside.

  3. Most importantly, I stay positive!
    Even if the worst should happen and my fears turn out to be right once in a while, I stay positive. I will figure it out. So many doctors have told me that I could not do this or I could not do that. That I had to accept a certain situation. And so many times I have proven them wrong. A great deal of that achievement relates to believing in being able to do something – and being able to change your own situation.If you stay positive, fear will never be able to get the better of you. Because you believe in being able to stand up to what ever challenge you might face.