chronic illness

Coming Up For Air: Reclaiming Life With Chronic Illness

This past week may have been the hardest week of my life. I don’t think I have ever been so low before. I felt like I was in the bottom of a deep, dark pit and life with chronic illness had become suffocating. Until now.

As you know, I am in the process of fighting for disability due to my multiple chronic illnesses. In addition to filing for SSI with the help of an attorney, I have been trying to file my claim with my long term disability company as I have paid on a LTD policy for over eight years while working for my previous employer. When my doctor put me out of work, I thought that SSI would be the headache as I believed paying into a policy in case of circumstances such as this would provide necessary resources. After all, is that not the point of purchasing short term and long term disability policies? Needless to say, working with my LTD company has become a complete nightmare.

After months and months and 28485620 pages of medical records, I received a letter from the company that hit me like a ton of bricks. It felt like so much more than a denial letter. I am not sure if I have ever felt so judged, belittled, and demeaned not only as a patient but as a person. I am too young. I am too put together and look too well to be as sick as I am claiming. I am exaggerating my symptoms. I haven’t been to the hospital enough. I’ve worked this long being ill, why stop now. There were six pages of statements such as these.

Obviously feelings are probably at the bottom of the company’s priority list and avoiding making payments is at the top but the picture that they painted with the words they used of my life and the impact that multiple chronic illnesses have on every aspect of my life could not have been farther from the truth. They even tried to pin the doctors not only against me but against each other which added to the hurt. I had always bragged that I had such a great team of physicians supporting and advocating for me so it was almost a double whammy. At that moment, not only did I feel judged and disrespected by a faceless insurance company but betrayed by doctors I had grown to respect over the last ten years.

It was the hardest thing I have ever had to read. Thankfully my husband was home when I read the letter because honestly, I am not sure how I would have reacted if I was alone after reading the letter. It was like I had been stabbed in the heart and I plummeted very quickly into a very dark place.

I felt completely empty and even the smallest things took an enormous amount of effort. My anxiety was through the roof and I began to question everything.

The only thing I could cling to was the promise that God was with me through even the darkest moments. I had to believe that He was with me and had plans for me despite the hardships I was facing. Clutching Hope in one hand and the hand of my husband in the other is what got me through. He supported me in a way surpasses understanding.

So here I am a week later working to put the pieces back together. I had an appointment with my rheumatologist yesterday which helped to put me back on the path to healing (at least mentally and emotionally). He listened patiently and compassionately as I emotionally regurgitated my feelings and fears about the current my state of health and the disability process. He reminded me that no matter what the letter said that I have his complete support. He was worked with companies like these for years and they with exploit every loophole possible while pinning the blame of denying the claim on the doctors versus themselves. He had my back.

For the first time in a week, I feel like I can breathe again. I am ready to start reclaiming life with chronic illness and ready to start feeling like myself again. My true self.

I have purple dye on my hair as I type. I have plans to overhaul the blog design to get a fresh jumpstart. I am full of ideas to pour myself back into writing.

I am ready.

Fresh air feels good.

Photo credit: spinster cardigan / / CC BY

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9 comments on “Coming Up For Air: Reclaiming Life With Chronic Illness

  1. Cheryl says:

    it hurts so much to be questioned and to have the fact that you TRIED SO HARD to keep working held against you.
    it IS real. don’t EVER let yourself doubt that essential truth.
    I hope you are able to get a better outcome on appeal…I don’t know if it is anything like the SSDI world where they deny almost everyone at first and then see who’ll bother fighting.

  2. Good job getting out of your low! Staying positive is the hardest part, and hiring a lawyer to deal with your SSI claim is the best thing. It took me years to get my husbands approved. I wish I would have hired a lawyer.

    • Jamee says:

      Thanks for the encouragement! We are currently waiting for the decision of my first SSI appeal and thankfully my attorney’s office has done everything they can to make it as stress-free as possible for me which is so worth it!

  3. joy says:

    *biggest hugs and prayers* I am so sad and angry reading this post. My heart is literally racing and my face red and hot because I too have seen papers like this when I had to apply for leave from my hysterectomy and started the process of disability. It is so unfair and like you said, it feels like an attack on you and all you have worked towards on laving abundantly through multiple chronic illnesses(which I too suffer from). I am so sorry! I am glad that the Lord has restored peace and your spirit has been renewed! God is good!! Please know I will be praying for you as you go through SSI and dealing with these doctors and lawyers and judges. And remember God is always by your side each step of the way!! I love your blog and look forward to all that you have planned! God has great plans for you!!! Oh btw I LOVE the purple hair! 🙂 God bless!

    • Jamee says:

      Thank you so much for your support and encouragement! Every time I think about that letter I get angry inside so I’ve just had to file it away for the time being so I can get my emotions in check. I am going to consider appealing the decision because I’ve paid for that coverage darn it! 🙂 We can get through the process together! We are strong and awesome women and God has awesome things in store for us!

  4. […] I mentioned yesterday, as a part of reclaiming my life, I am working towards a new look here at a New Kind of Normal so I jumped at the chance to become […]

  5. Beth says:

    We’ve gotten similar letters when applying for SSI Disability… We ended up appealing twice by ourselves and a third time with a lawyer with doctors that totally supported us. Keep pushing! But remember that company doesn’t know you personally and God has seen your effort and validates your need.
    Psalm 17:2 (NIV), “May my vindication come from you; may your eyes see what is right.”

    • Jamee says:

      I will never understand how these companies think they can judge the impact of illness on a person’s life from a piece of paper. As frustrating as it is, I refuse to give up and will continue to fight! I know that God led us to the decision to pursue disability and trust that He will provide! Thank you for the words of hope & encouragment!


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