Living and Coping with Chronic Illness: Staying Positive is Key!

Today is day 3 of recovery from my laparascopy procedure. I’m still in quite a bit of pain, nauseous if I get up to move around  and have a huge swollen belly. My body hasn’t stopped itching since I had the procedure despite taking a shower and rinsing all the antibiotic gel stuff off. But overall, I think I’m healing more and more each day. I feel much more aware today despite being very sore still.

The laparascopy confirmed an endometriosis diagnosis and I also have an inflamed bladder, whcih I will need to go to a urologist specialist to have it cheked out. I will go back to the doctor  in a couple of weeks to follow up and see where we go from here.

I wanted to write this post after a negative comment I read on a forum while researching chronic disease. It was a comment about a certain chronic disease being “fake” just to collect disability money and live off the system, which I found highly offensive. I never personally had someone say this to me (partially because I would chew them out) but I know other friends have heard similar things. I have however heard the following on numerous occasions:

Yes, I know there is “something wrong with me.”

Yes, I know that this “isn’t normal.”

Yes, I am “sick of being sick.”

N0, I am “not pregnant.”

No, I am “not falling apart.”

I do not need a constant reminder from people about what I am going through. You want to know what I need? More of the supporting, loving and encouraging people in my life that have been there through it all, never question my illness or treatment and make me feel sane during a very emotionally charged time. If you are not one of these people, please don’t expect to hear from me that much.

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Sometimes I think I need another business card for my issues or a line on my resume for my special needs.  It’s very hard for some people to imagine that this could happen to someone all at once or that the treatment is difficult and slow. It’s even more difficult for people to believe it happens to young people like me who are in their early 30′s. That usually takes the direction into a conversation of how much worse it’s going to be when I get “older.”

Living with a chronic illness is difficult enough, we don’t need people in our lives challenging how we feel, minimizing our pain and treating us differently for suffering. I never thought in a million years I would spend an entire year trying to find answers. I didn’t expect to spend a whole year dramatically changing my entire lifestyle.

A chronic disease is something that lasts longer than 3 months and affects numerous parts of your life. Right now I’m living with celiac disease, endometriosis, arthritis, latex sensitivity and hypothyroidism. My body is completely out of whack. This is challenging enough as it is, I don’t need inconsiderate jerks to remind me.

Alright, we know this is an issue and if you are reading my blog, I know you totally understand where I’m coming from with this point. So, how can we help ourselves through this?

1. Slowly back away from people in your life that aren’t supportive. The negativity is draining you emotionally and is impeding your recovery from illness. In order to get through it all, you have to be mentally and physically tough. It will be hard to say good bye at first but I can promise it will be worth it in the long run. Replace those negative nelly’s with people who genuinely care, love and support you unconditionally. This includes a clean sweep on social media sites like Facebook, Twitter etc.

2. Don’t debate people over the issue. There is no point. If they don’t or can’t understand what you are going through, they aren’t going to change their mind after you “educate” them on the disease. It isn’t worth your time or energy.

3. Focus on yourself for a while. It’s ok to miss the parties, happy hour’s and other social events. They will be much more fun once you can get out there healthy and enjoy the time with friends.

4. Follow doctors orders. I struggle with this. I want to be superwoman and heal quick to keep moving at a fast pace. I actually thought I would be able to drive to Pittsburgh to speak today at the Celiac Awareness Tour 3 days after my surgery. Primarily it’s because I am nuts. Sitting in a car for 3.5 hours there and back would have been torture for me. But I thought I would be fine after 1-2 days post operation. Lesson learned on this one!

5. Some of you might get mad at me for saying this but don’t use your illness as an excuse to get out of things all the time. That’s when people get mad at you and when they start thinking your condition isn’t “real” or whatever else they think. Just be honest and truthful with people and they will be much more accepting of your empty seat at the dinner table.

Do you suffer from this? 

How do you stay strong in the presence of non-believers?

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