10 Things I’ve Learned From Living With Chronic Illness

Alesa Hart and Momby Alesa Hart

1. Getting all of the rest that I need does not make me lazy. Even when I’m not moving, my body is expending a huge amount of energy on powering its overactive immune system, and on defending itself from the subsequent pain and inflammation. So while many times it might look like I’m not doing much, I’m still probably doing more than most others.

2. No matter how much it hurts, I still have to find a way to move. (Of course, I’m not advocating for movement that results in injury/harm.) During one of my first major bouts, I thought that the best thing to do was to move as little as possible. This really didn’t lower the pain, but it did eventually result in atrophied muscles, months of daily physical therapy, and having to learn how to walk again

3. If I’m going to be in pain, I might as well be doing something that I enjoy. I may not be able to do certain things like I once used to be able to, but chances are I can still do more than what I thought possible. Learning this lesson, firsthand, is priceless for my mind, body, and soul.

Alesa Armstrong and son4. And for those moments when it’s just not possible to do something, cancelling at the last minute is perfectly acceptable. I’ll be honest, and I’ll tell you the exact reasons why I’m not able to participate. Please don’t take it personally…I’m just as disappointed, if not more, than you are.

5. If you are a doctor or healthcare professional, you must earn my respect. I, the patient, will work just as hard to earn your respect. I will ask lots of questions, and I will listen to what you have to say. When it comes to treatment options, though, I will be the final decision maker. (After all, no one knows my body better than I do.)

6. Achieving acceptance is hard. (I used to think that doing so meant “giving up.”) Just when it feels like I’ve accepted everything there is about my illness, something pops up, and I want to deny everything, all over again. With chronic illness, I don’t think there is such a thing as “complete” acceptance…there’s just a continuous journey, back and forth, between denial, acceptance, and so many other emotions.

7. No matter how bad I’m feeling, no matter how much pain I’m in, it’s *not* okay to take out my anger and frustrations on other people, especially those who are close to me. Yes, it’s fine–sometimes even healthy–to feel angry and frustrated…but I have to know how to release this energy in a way that doesn’t harm myself, or those around me.

8. Never, ever, compare my pain and illness to those of others. My illness is mine, and mine alone. I’m completely entitled to feel everything–emotions, symptoms, and otherwise–that results from living with my illness. (I’m entitled to feel everything, that is, except shame.)

9. While a positive attitude isn’t going to “cure” me of my illness, it’s certainly going to make it easier to overcome the challenges that I encounter on a daily basis. Yes, I do have occasional periods of doom and gloom…but I make a point to pass through them as quickly as possible. The mind is a powerful tool, and I must use it to my advantage.

10. Just when it feels like my world is going to fall apart, the best thing for me to do is to sit down, and take a deep breath. And another one. And another one…until I realize that everything is indeed okay.

Linda

About our Co-Founder: With a bachelors in Social Work, Linda is 53 years old, happily married with eight children and 17 grandchildren. Diagnosed with MS in 1995 and now having accepted and truly embraced her new reality, Linda has created MSrelief.com. She is dedicated to proving that joy can be chosen while living with Multiple Sclerosis. Linda specializes in helping others, especially those with MS attain the lifestyle, independence and happiness amid living with MS.

2 Comments:

  1. I was astounded by this list! It is EXACTLY what I would say too! I would only ADD one thing: just because I am smiling or laughing while doing something enjoyable, does NOT mean that I am NOT in pain!! So many times I will be at the park enjoying my children, when someone will say, “Oh, so you aren’t hurting today then?” My pain is there every single day, all day. My tolerance of the pain changes with my fatigue, depression level, stress, and sleepiness. (Yes, sleepiness is a completely different feeling than fatigue for people with MS!) I have had the misinformed (read: ignorant) say they think I am cured, since I am out at the ballgame or on the boat. Seriously?
    Thanks so much for the great post, and for reminding me I am NOT alone.
    Leslie

    • Hey Leslie!
      I am so sorry for your pain! Personally I am happy in so many ways even living with MS but I don’t know how I would feel if I was living in pain! As soon as I get home from vacation I’m going to write a post about pain management, you said that your pain level is a little better when you ‘take it easy’, if you have time I’d appreciate your telling me what you do other than that~
      ~Linda

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