An open letter about life with Multiple Sclerosis

An open letter about life with Multiple Sclerosis

An open letter about life with multiple sclerosis. To everyone who are concerned…

The world is full of people who do not understand multiple sclerosis. I know how difficult it is to compare when you do not live with this disease, but I hope that what I must say helps open your eyes and hearts to see what my life is .... I hope you will see and understand the life of someone who has MS. First of all, I want to say that multiple sclerosis is real, it hurts, it is full of challenges and struggles. And if you have not yet understood it, it is invisible to most populations, because the damage occurs within our body. Her effects are felt in other ways, while I walk, speak, and try to pass through the day by concealing symptoms, but if you could see my body from within, you would not judge me so quickly. My body inside is a wreck filled with chaos.

Of course, I have my famous smile on my face for most of the time, but that does not mean that the disease is not there. It just means I hide it very well. You see the mask I carry, but let me take it off for a moment. I am angry, frightened, paying and scared. In my subconscious is the fact that my future will be drastically different from what I am today. You know, MS is a progressive disease. That means that, although today I am quite right, tomorrow may not be at all. It can take a year or 20 years, but my life changes every day. Know that it hurts me when you make it easy to know what is best for me. MS affects every part of my life, but that does not mean that I am not able to make decisions. Do not exclude me from some things because you assume that I do not want to participate or because you think it is too difficult for me. Let me make that decision. It hurts me more if you omit me than if I will have to say "No, thank you" to your call. Give me a choice. Also, please do not stop calling me though I told you many times NO.

Another thing that really hurts me is when you tell me how you know how I feel.

Do you really think that you understand a fatigue that never stops, stiffness, pain, incontinence, various vision problems? I have severe damage to the brain and spine in the form of lesions that cause chaos in my body, and you are trying to compare it with your symptoms of colds? Please do not do it! Unless you yourself are suffering from multiple sclerosis, please do not even try to tell me how you know how I feel and how I feel.

Support me, help me, console me if necessary, but do not assume that you can solve it.

The problem is when you constantly want to fix me, as if I was broken. I'm not broken, I just live with a chronic and incurable disease. So my condition can not go away, at least until they find the medicine, but they have not found it for now. And all of the medicines that you have read on the Internet - these are not medicines! These are techniques for alleviating symptoms, a beautiful desire, or simply scheming someone for money. We have not found anything that will completely remove multiple sclerosis from our lives. Nothing but miracles! So I do not care about the recipe from a beautiful friend from aunt's aunt who is cured with a combination of bumblebees, foil and baking soda! I do not care about the recipe. Accept me as I am. I am grateful for your concern, but your "remedies" cause me more concern than they help me.

I still want to tell you something ... for some reason you have a need to ask yourself whether I feel better whenever you see me. As I have written here, MS is a progressive disease and I really do not have an exact answer to this question. Do I feel better about the bathtub or what? On yesterday? Ten minutes ago? Last year? Instead of asking me if I feel better, treat me like everyone else. There are many other things in life besides having multiple sclerosis. And I do not want it to be the main topic of discussion whenever we meet.

I'm a lot more than my diagnosis, from MS. I am still, and I would rather talk about gardening, traveling, architecture or a movie that is coming out soon. Do not ignore my fight with the disease, but do not even focus on it alone. Take note that I have my bad days and sometimes terrible, terrible, really terrible days. Getting out will not make them better. Actually, going out in those days will make them worse. If I do more, my symptoms will not be less.

Yes, exercise is very important, but it needs to be done carefully. She says "in a healthy body of a healthy spirit" is not applicable to me. If I am forgiving and testing my endurance, my body will be rebuked for days, if not for weeks. I have to work everything carefully and with lots of planning. Sometimes my bad days in a minute are exchanged with good moments. So much rebellious my body can be!

And that's why I beg you not to tell me that I have to go out, I need to lose a pound ... Because they are not the causes of my struggle and they are not responsible for my pain. And so the next time you decide to judge and comment on my bad days, bad mood or just my responses to your insensitivity, please remember this: I am the same person as before, before I was diagnosed with multiple sclerosis. I am intelligent, caring, fun, full of love, ready to laugh at all times, I am a great friend. But, know how I have the potential and be angry, weird and frustrated. It's all I am. More than anything, I would like to find a cure for MS, but today it will not happen. Please do not look at my disability as if it were all I did. Because I am still ... MS and myself. The only difference is that I need more love, support, care and understanding. I want to have someone who is fighting me in this disease, not against me.

Signed: MS BORAC

Source: Penelope Conway, Positive Living with MS

This letter went through the world and many people recognized it. And I am one of them ... For one goal: raising awareness of multiple sclerosis. And that's precisely why I write this blog, gather and connect.

Be happy and good to the next reading.