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Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

'Just when I think I have learned the way to live, life changes.'


pink sea

When I was first diagnosed with Raynauds, I never thought that my illness would amount to life lessons. How could something that caused me so much pain, frustration, and uncertainty teach me anything ..? It was in those moments of pain, frustration, and uncertainty, though, that I gained some of the most valuable life lessons. It was in those moments that I gained something I will never be able to quite put into words.

- It is OK to need and ask for help.

As someone who has always been fiercely dependent, it struck me as so strange asking for help with my newly diagnosed chronic illness, this was a massive adjustment. At first, I tried to do it all on my own. But as my health has started going down hill further and I became weaker, I began to more-so need the help of others, even if I still felt bad for asking. I finally had to admit to myself that asking for help was ok and did not make me any weaker or incapable of battling my illness. I had to admit to myself that I truly did need the help of others, whether it was to help doing chores or cooking when I am out of energy. There is absolutely nothing wrong with asking for and accepting help with a chronic illness! Your family and friends want to help and will never see you as a burden, so rest when you need to and take the hand reaching out to you.

- How to surrender.

I like lists and I like to organise. I like organised lists! I have always been the type of person who has to have everything planned out, routines to follow, and the feeling that I am in control. The thought of losing control used to be terrifying to me: until I became chronically ill. When I became chronically ill, I learned that my illness had no schedule, no agenda. My illness was running by its own clock whether I liked it or not. This forced me to learn to let go of some of the control that I ever so craved. I had to learn to let go of knowing exactly what was going to happen next. Was it scary? Yes - and it still is! But learning to surrender control of the parts of my life that I truly have no control over has been one of the most freeing changes that have come from my illness.

- Do not take life for granted.

No one wakes up expecting to one day become chronically ill and sometimes we forget just how precious and fragile our health truly is until it is taken away from us. Before I became chronically ill, I loved to cook, play outside and generally everything else, but thats not to say that I didn't complain about it from time to time. However as time went on I knew I was sensitive to the cold and the heat, this would stop me wanting to go outside and play, or cooking for the family. I became mostly housebound, going out once a week, having to prepare myself for the pain and burning that dinner would bestow. For years, I took my ability of having a normal life for granted, never expecting it to one day be taken away from me. Nevertheless, my chronic illness has taught me not to take anything in my life for granted.

Quote

- There is great power in a positive outlook.

While it’s not realistic to be positive every minute of every day with a chronic illness, striving to find positivity in every single day is monumental in living happier, despite the challenges you face. When I find myself feeling frustrated, angry, or uncertain about my current situation or the future, I remind myself that what is going to happen will happen regardless of whether I face it with a positive attitude or negative attitude. Why not choose to make the most of the situation?

- You are not alone.

One of the most valuable lessons that I learned from my chronic illness was that I am not alone in my fight. In addition to family and friends, I have been introduced to an amazing community of other people fighting both similar and very different illnesses. Finding this community of amazing warriors has served as a valuable reminder that even on my most challenging days, there is someone who understands. Getting diagnosed with any kind of chronic illness can be scary, lonely, and very isolating, which is why it is so important to remember that you are not alone. Reach out to friends, family, and others going through similar battles. It is these life-changing chronic illnesses that bring us all together and remind us that we are all human and we are so much stronger together.

- Resting does not equal laziness.

This was one of the hardest lessons that my chronic illness taught me. As someone who has just started work, I have found that I need more rest then play. Resting is providing my body with precious time to heal, renew, and strengthen. Pushing myself to keep going when my body is asking for rest only ends up setting me back further and then forcing me to rest (and maybe even for longer than before). Listen to your body, know when you have overdone it, and allow yourself time to rest when your body is asking for it.

- Your chronic illness does not define you.

When you have a chronic illness, it is easy to feel like you have become your illness because it consumes so much of your life. You are labeled by your illness when you go to the doctor’s office or hospital.Your chronic illness may have visible side effects or requirements like a feeding tube, wheelchair, colostomy bag. But here’s the thing: your chronic illness does not define you. It does not get to decide who you truly are on the inside. You are so much more than your chronic illness and the things that it brings. You can still be loving, kind, bold, generous, funny, brave, optimistic; nothing can ever take away the love and kindness that you hold within your heart.

While my chronic illness has changed my life in many scary and painful ways, I am forever thankful for the life lessons that it has taught me. It has made me a stronger, braver, and taught me to truly appreciate every day that is given to me. No one knows what the future holds, but when you seek the positive and the lesson within every challenge, you begin to realize that sometimes our biggest blessings are hidden within our biggest lessons.

Know that it takes nervy defiance and stone-cold courage to wake up, soldier on and fight your everyday internal war.

Until next Monday,

Bethany S.

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