Interviewing a friend with a chronic disease-about happiness

Hi guys,

today a more personal blogpost about my friend who has been ill for several years. Her diagnosis: POTS and Lyme’s disease. She remained to stay so strong through this awful process and I want to talk with her about this.

So, my friend Nathalie is one of my closest friends since forever. We went to high school together. In her last months of high school she noticed that she became more tired on a daily basis. She didn’t think that actually her disease was already there that time… After high school she tried to go to college to become a nurse. After a while she became even iller and wasn’t able to do any internships (because of her fatigue). So then, she switched from college and wanted to become an accountant (because the internships aren’t physically that hard).

In a couple of weeks, she wasn’t even able to study anymore so she dropped out of school. I would be totally depressed that I couldn’t go to school anymore, so it was already inspiring for me that time, that she still stayed strong. When time passed by, she became iller and iller. She was tired all the time, felt nauseous, had fevers, muscular pain everywhere,… at the low point during her disease she wasn’t able to walk and had to stay in bed all day and night. She layed in her bed, in a super dark room (she couldn’t stand the light anymore because it made her feel ill). She also had earplugs because even noises made her feel bad… Now she’s a little bit better but she still isn’t okay. The problem is, after all this time, they didn’t find a decent cause of the illness. They think that it’s Lyme’s disease but can’t give a decent, concrete diagnose.

With bad diagnosis and the fact that she felt so bad, they thought one time that it was all-in her head and that is was psychosomatosed. She went to the psychiatric department of the hospital for that. I was chatting with her, from time to time. I hadn’t seen her in ages since she was ill. We spoke to each other by texting. When she told me that she had to go to the psychiatric department, I felt so bad for her. I wanted to visit her but wasn’t able to do that because it’ll only tire her out more. I asked her that time how she managed to not go totally nuts there, she couldn’t answer that decently because she was too ill to even think or talk about it. Now, she’s able to tell her story to me. I love her story so much because her happiness inspires me. All my personal problems seem to be so tiny, next to hers.

(This is us by the way, february 2010 in highschool, dressed up for our final 100 days of high school: we were supposed to dress up as prostitutes, don't mind my emo hair haha!)

So here’s the interview.

Hi Fox (my nickname for her), we’re here today to talk about happiness, for my blog. You have been through so much the past years because of your illness and I have a few questions for you. I would like to know why and how you managed to stay strong through the years. Maybe with this, we can inspire others as well?

1) How do you remain strong? How did you stay strong through all these years and your lowpoint and did you do something particular for that?

I have always had two choices in my life. If this is the fate that I have to undergo, I need to try to make the best of it every day and keep smiling. OR You will get stuck in depression and let yourself be carried away by emotions. If you go for the second choice, you will only make your situation, which you can not change, even more difficult than it already is. I think that I would regret it, if I had to look back to my life and for all the years to come. I don’t want to live with regrets. In my darkest period, using my fantasy, my imagination helped me. Thinking about the world outside when I could barely do anything, so I imagined myself that I was at some breath-taking location. This was a way for me to disappear from reality. What has also helped me enormously is that I have always kept hoping. I was convinced that this situation could never last for decades. Even now, I still believe that one day it can all be different.

2) When will you fully, truly be happy?

As long as I am ill, I will never feel completely happy for 100%. There is always something in this situation that causes a missing piece in my life. Only when I can be healthy again, my life would be complete again. But as strange as it sounds, I am happier than ever before. Not because of my situation but because of the fact that I have started to look at life differently and now I actually live differently. I think if I could only ever be healthy again, that that day I’d be the happiest person on earth.

3) At some point, they sent you to the psychiatric department of a hospital. How did this make you feel?

Because chronic Lyme is only recognized as an occupational disease in forest guards, many doctors put your symptoms on the psychic. It would be due to stress or it is just a disease all between your ears, imagined and created in the head. A doctor suggested that I'd be admitted to the psychiatry. Normally I would never even discuss this, but I had a mentally very difficult period. For example, I cried from exhaustion when my mother was trying to wash me in my bed. I was so physically so that the suffering became unbearable. I started thinking more and more about suicide and felt that depression was near. Because I needed emotional support in this situation, I agreed. The period in psychiatry was certainly not easy. I was soon seen as someone who was deliberate, played comedy or exaggerated. Because it could not be that someone was so sick that he could do almost nothing. I had to go and eat from the accompaniment in the hall but this was physically impossible for me. Still, I certainly wanted to try it once because I think you should not say that you can not do something without trying it first. With closed eyes, earplugs and completely sagged in my wheelchair, I quickly took a few bites. As expected, it was a real torture. I could not do this anymore and immediately wanted to go back to the room. The following days I was forced to eat in the hall but I refused to. Nobody understood that it was physically impossible for me. I was punished several times for this and I couldn’t get any more food. From then on, I was completely ignored by the staff. It seemed that forcing activities became more important than emotional support. I have spoken to a psychologist for only one hour during the entire period that I was there. As the weeks progressed, the atmosphere between me and the guidance started to improve. They saw that I really did my best to try things, but that I just could not do it with the best of the world. They have extensively apologized and said that they had learned a lot from this situation. And despite of the fact that I had received just little emotional help, I came out mentally stronger again.

4) What’s been your biggest fear through this entire process? Especially in the initial period that I got sick, I had a lot of problems with anxiety. I was used to having a healthy body for 18 years, just like you all. And suddenly from one day to the next day, my body changed to a body that I didn’t have any control over. A lot of things happen in your body that you even don’t know about and that you do not control at all. It is also difficult to learn that you can’t simply do what you want because every action provokes a reaction in your body. It certainly took me a year before I got to know my body again. This, with the help of a psychologist, meditation and mindfulness. It helped to control my fears again.

5) Do you now still have any anxiety over your disease and your near future? My biggest fear is what awaits me in the distant future if this situation remains unchanged. I am so heavy in need of help that I can not live independently (now, I still live at home). Even with the help of nurses and others, this would be impossible. If something happens to my family that prevents me from living at home, then I am forced to stay in an institution. I am very sure that this would make me unhappy.

6) What would you like to change about yourself?

Uncertainty is my biggest issue. And especially about what people think about my illness and my personal or physical appearance. I am too busy with what others think about me. I would very much like to have an "I do not give 𝚊 fuck" attitude.

7) What’s your most valuable memory in life? I do not really have one valuable memory but more of a valuable period in my life. I have a lot of pictures that I kept from the period when I was 15-17 years old. This has been the most beautiful time in my life for me. I attach a lot of value to those photos and I regularly look at them to recall memories from the past. Every time, I suddenly remember some hilarious story and I immediately have a smile on my face. For one reason or another this makes me happy if I have a hard time.

8) Are there any blogs, books, documentaries,… that you’ve seen or have read that have helped you?

To be very honest, no. I prefer human contact. For example: I have had a lot of contact with fellow sufferers because they make me feel that there is someone out there who fully understands me. I even have a companion who has become a true friend.

9) Is there something that you actually miss in your life right now?

What I miss most is that I no longer feel that 'm alive. The world is moving forward and I am only watching. I no longer make a part of it. The number of times that I have been outside in the last six years to do something fun are countable on my two hands. I am even tired of the outside air because I am no longer used to being outside. I also miss the fact that I can no longer build a strong bond with anyone. Even in my own family, I feel that we live side by side. Simply because I do not have the energy to sit with them in the living room or to talk to them a lot. I often do not know half of what my family is doing and I feel like a complete outsider.

10) My final question: What kind of tips or advice would you give to other sufforers from a chronic disease to remain strong and to work on their happiness?

I have learned things from my illness that I would never have learned as a healthy person. I am happy that my illness has completely changed me as a person. I have made a list of a number of things that I have not only learned in recent years, but also actually use.

If you are ill, the first step is to learn to accept. This is perhaps the most difficult step. Sometimes you have to learn to accept in life that not everything can go as you imagined it or hoped that things would be. You’re in a situation that remains unchanged, is meaningless. This does not only apply to a disease. For the healthy people among us: view this much wider because this can apply for everything.

I have learned to enjoy the smallest things in life. Believe me, I become intensely happy from the most stupid things now. For example, I can have an incredibly bad day and see a beautiful sunset and this makes my day all right.

Or if I ever find the energy to do an outdoor activity, I enjoy it 10 times as intense as I had before I fell ill. I can enjoy walking for half an hour with the wheelchair for weeks and this gives me another mental boost.

Take positive energy out of what you still can and leave the frustrations about what you can no longer do as much as possible. In the end you will really be happier here.

Do not regret mistakes from your past. Everyone makes mistakes and without tem, it would never have made us who we are today.

Carpe diem. Live from day to day. Make the best of every day and do not worry about what will be tomorrow.

Be grateful for every opportunity you get in your life. Consider that not everything is self-evident. What seems to be very common to you can be something magical for another.

Learn what the essence of life is. Do not worry about futilities but put your energy into what is really important in life.

Learn not to judge others. You can never say anything about someone until you are in his / her shoes. Would you do better?

Never give up!! Every day can be a new beginning.

(the painting was actually a painting that she made a couple of years ago, all by herself!)

So this was the interview, if you would like to know more about her inspiring but sad story, head over to her social media. There's a facebook page with a lot more information about her disease. The problem is, she needs a little help from all of you. She and her family can't pay for a new expensive treatment... so if any one out there is interested in donating, feel free!

https://www.facebook.com/223864051479656/videos/264193077446753/ (video about her story)

https://www.doneeractie.nl/hope-for-nathalie/-16386 for donations!

Thanks Nathalie for the inspiration! It's rare to meet friends like you. You guys should also know this: as you might know yet, last year I broke up with my boyfriend. This was probably the hardest time in my life. When she was laying in her bed, terribly ill, she texted me constantly to ask me how I've been. I mean, this is exactly why I told you guys that she's a good friend. All my problems are nothing, compared to hers! Okay, now I'm going to cry for a couple of hours to get over this haha! Thanks a lot girl.

X Steph

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