Sick Lives Matter

Sick Lives Matter

I was messaging with my therapist recently, frustrated with the challenge of trying to find a treating pain management specialist under my new insurance. Sharing with her how angry I’ve been in recent years after being brushed aside by more than a dozen physicians I’ve looked to for help (messaging because speaking on the phone or seeing my therapist in person is out of the question for me). She rationally offered advice like, “Did you ask your last doctor for a referral for a new pain doctor?” And, “Have you tried seeing any specialists for your conditions? Why are you in so much pain? How about taking more pain medication? Β No one should be suffering like you are.”

Why did her rational, reasonable solutions make me want to scream?! Maybe because after over a decade of chronic illness, I know that her innocent view of medical care is like the ABC’s and I’m working off of XYZ, but the issues we face concerning our health care should not be so complicated. We are ill, and so many of us aren’t able to go so far out of our way to find help. It really should be so much more simple to find a good treating doctor. And when it isn’t, we fall through the cracks. We get worse. And the worse we get, the worse we get.

When doctors are knowledgeable about your condition and how to offer solutions, they will. When the options available are helping you manage, and the practice is making money off of the treatments offered, everyone is content. However, if your condition happens to worsen outside of the doctor’s comfort level, you might find yourself in a pickle. Your records show that you’ve tried so many different treatments for condition A, however because you now have conditons A#%@, other practices are less willing to see you. You wear a scarlet letter “C” on your records for COMPLEX, and from then on, you seem to be tucked into the bottom drawer of society.

This is happening to so many patients across the country. The new CDC guidelines didn’t help by limiting pain medication for chronic pain management, and neither did Obamacare. But, this is not a new problem and cannot be solely blamed on new government protocols, even if the current “solutions” have only pushed those of us with serious ongoing health needs further under society’s invisible rug- making us more invisible. Who sees to our care when we become “more complex?” As it stands, the more simple your case= the better your care. The more complex, rare, or worse off you are= the worse off your care is likely to become.

People who could have fully recovered and started back to work if they had been deemed worthy of attention earlier on, instead, further decline physically, mentally, and economically, and into a state of no return, forcing more and more people onto disability and social security- a status which statistically is difficult to recover from once you start.

#sicklivesmatter

Meet Kayla. Kayla is near middle aged and was diagnosed just after her symptoms began. She was set up with a team of specialists by her Primary Care Doctor. Kayla has had to change her life around since her diagnosis and feels so much loss for the things she once loved to do. She wishes there were a cure, but seeing her doctors regularly and trying new treatments reminds her there is hope. She is managing her condition by resting at home much of the time and has been able to continue mothering and finding support in her husband. She continues to work only part time now, and in her rest/recovery time, she has started to do what she always wanted to…write a book.

Meet Jonathan. Jonathan is in his 20’s and saw several specialists soon after his symptoms began, but no diagnosis was made. He spent years asking various doctors what might be wrong, but he was told he seemed young and healthy and the few tests they ran came back normal. Over time, his health so interfered with his work that he lost his job. His wife thought he might be faking his disorder to get out of his responsibilities and eventually left him, taking the their newborn. He couldn’t pay the bills any longer and lost the home. Finally, after years of illness, Jonathan is diagnosed, but his original condition left untreated for so long has caused a few other complications which are likely now permanent. With his diagnosis, he can now apply for disability, but he will likely never be able to work again or get back on his feet- financially or physically.

#SickLivesMatter

You can see in the best case scenario, how much hope a good doctor can offer. Even in Kayla’s case, everything changes, and we need the help of reliable physicians because we can’t do it on our own.

I can tell you that this happens to those with money, those with the best private insurance, this happens to those lucky enough to have family who can advocate for us, it happens to those who can advocate for themselves, it’s happening to the young and old, it happens to those with government insurance, it happens to people who can’t afford the special doctors, and it is especially happening to people whose health suddenly takes a sharp turn so that they can no longer advocate on their own behalf. People are slipping through the cracks, and there are more of us with chronic illnesses and rare diseases now than ever before!

You think it’s the emergency of your life, and you always imagine doctors being there for just this time, but you are made to feel that a chronically ill person’s emergencies aren’t quite as worth while. Slowly but surely, like a Polaroid picture’s image emerges, you get the picture that your life isn’t worth while either. Many people like myself won’t even call an ambulance if they believe it’s a life or death emergency. We’ve been down the hospital road too many times, and believe from experience that there is no hope in that big white building- not for so many…too many of us.

If they keep tucking the sickest people away in the bottom drawer of society, if they keep us under wraps, if they don’t allow us the medication and doctors we need to survive, and if they continue to legalize euthanasia in the U.S., then maybe we’ll all just disappear, and leave them alone, right?

Wrong! They aren’t shutting us down, they’re starving us out!Β 

We might not be able to picket the CDC, or storm the halls of Congress, or hold a sit-in demonstration inside of a hospital building, but social media can’t contain us. We can write our senators, make videos, sound clips, share our stories on Facebook, become ambassadors for rare disease foundations, get involved with patient advocacy groups online, or guest write for blogs from our couches, wheelchairs and hospital beds. Maybe we can’t go on the walks to raise money for a cure, but we can help organize them! And don’t forget, our stories are the most powerful weapons we have to make change.

You are the same person you always were; your health changing is not your fault. Your worth is not defined by how well your legs work, or if you were able to eat something solid this month, or if a doctor deems your medical file “worthy” by looking at the papers inside. You are not your file. And I know I’ve caught some slack for saying this- but you are not your body either. You may not be able to scream, but we need your voice! Your story is unique, and will inspire someone else to keep going, and move another to vote differently. Even though it’s not your job to be an inspiration… you already are. You matter.Β 

#SICKLIVESMATTER

Email abodyofhope@inbox.com if you would like to share your story or to ask how you can get involved with advocacy programs online.

 

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About abodyofhope

I do not know why it is that we must wade through tragic circumstances to find truth. We nearly drown! But under the water, there are pearls. I hope in writing this blog, more will come to the surface. Over the past 11 years living with chronic pain, patient advocacy has affected my life through so many remarkable young people, women and men: SURVIVORS. These individuals are HOPE personified. I wish to honor them in the same spirit they have encouraged me to press on. Four years ago, I became bed-bound from a variety of chronic illnesses after a procedure meant to help the pain condition I had been managing for several years- went bust #BIGTIME. In the last 4 years, my entire life has changed. I have changed, but I am still striving to live my best life possible. Along with sharing inspiring pieces, medical/holistic research, and awareness articles, this blog is also an attempt to put my own pieces back together. Welcome to A Body of Hope, and thank you for visiting. [Complex Regional Pain Syndrome/ RSD, Postural Orthostatic Tachycardia Syndrome (POTS), Dysautonomia, Chronic Intractable Migraine, Cluster headache, Trigeminal Neuralgia, Occipital Neuralgia, Hypersensitivity to Sound & Light, Fibromyalgia, Cerebrospinal Fluid Imbalance......blah, blah, blah] >>> P.S. My headgear is protective for pain. I just rock it hard.

Posted on March 31, 2016, in Chronic Illness, Disability, Inspiration, Uncategorized and tagged , , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink. 19 Comments.

  1. Dr Ruth 2point0 (Anna)

    You may be interested in the series I just did about this. Stuck in Reverse (pt 1,2,&3) & pour some knowledge on me πŸ™‚ we do matter and it’s time we stopped sitting idly by!

    Like

  2. Jonathan after reading your bio on here my heart goes out to you. I too have had much the same experience. Went in to docs for years for back/shoulder pain and was told scoliosis isn’t a problem. Now I cannot work due to pain and heart complications from the nerves. Still no official DX either, and I have lost friends for “being too sick all the time” and had exes treat me like I’m faking even though the heart stuff was proven with monitors. Please don’t give up! We can get through this together. If a doc won’t believe or find info then MAKE them believe and shove it in their face. We gotta tell it how it is. They see us for five minutes, we deal with it the rest of our lives. Hugs and many blessings.

    Liked by 1 person

  3. This post resonated with me from start to finish because I belong to the Sick Lives Society, too. Thank you for sharing this and encouraging others to tell their stories; sick lives do, indeed, matter!

    Liked by 1 person

  4. Thanks for sharing this, I am a chronic pain patient that has several very complex medical issues that either cause my extreme pain or exacerbate it. I am working with #PatientsNotAddicts right now and am very interested in #SickLivesMatter. I am wishing you extra spoons and sending prayers for more good days than bad.
    -Andrea

    Like

    • Hi Andrea,
      That’s a wonderful cause! The. RSD support group I work with is joining up with patients not addicts as we believe in what you all are doing! Maybe we will cross paths. I’m hopeful this will be a campaign for patients to get more involved in community activism and possibly something PNA can get behind.
      Thank you for reading and commenting. I hope to see you on facebook #sicklivesmatter #patientsnotaddicts

      Liked by 1 person

  5. Been a doctor reject myself. The system IS atrocious. HealthCARE workers who aren’t caring at all. Know that for awhile now I have been praying for you and there’s no invisible rug in God’s Kingdom. His name is El Roi, the God who sees you.”I know in so many ways what it means to be “in the desert” like Moses waiting and waiting on God. He does cause all hung to work together for our good. Every time I read your blog posts, I see a piece of your beautiful broken heart, raw and tender for the world. A heart that cares. You are making a difference in people’s lives. You are very inspiring. I pray eyes open for invisible illnesses everywhere. Hearts soften towards the forgotten so they are no longer forgotten. God bless you, precious one.

    Liked by 1 person

    • I believe that God uses our weakness for His glory, so we never have to wait for our silver lining. He makes ALL things beautiful- even the ugliest of suffering. If my prayer is to be used, then I am also willing to share the struggle and victories that come with the journey I’ve been blessed with. I know you pray the same prayer as you are always willing to be a bright light in dark places. Thank you deeply for your prayer. I pray for you as well, and in fact, you have been on my heart this past March. I still share your Fibro ppiece- the first post I read from you. It’s so insightful, but unfortunately, I know it was born of being a “doctor reject”.

      Liked by 1 person

      • I don’t know if my heart would be as tender if I hadn’t gone through what I did. Trauma. Abuse by those who were supposed to protect and love me. God has used it for His glory and for me to be a blessing to others. Little by little I’ve been doing better health wise. It was the utter cutting off of all highly toxic people, including family (God’s leading. He gave me Genesis 12:1 repeatedly that says get away from your family). I’m still very exhausted though and get overwhelmed, sensory wise, and must retreat to people-less environments. But I praise Him. My hands are 90% better and honestly this healing process has given me the faith and boldness to pray for people I know who are suffering from chronic illnesses. I’m certain mine was trauma induced. I will continue to ask God to heal you, it can happen little by little. I’m praying to get better and better. God bless you, His precious one.

        Liked by 1 person

        • I’m so thankful to hear you are feeling better and better over time. Amen! I hate that you went through such horrible circumstances caused by those who were meant to care for you, and I see that you continue to use your struggles to help share the good news with others.

          I believe God can and does heal us, but I also believe healing can come in different forms, and healing isn’t always in the body. Some of us are afflicted for life, but God can use our weakness for His glory if we allow it. I thank you so much for your prayers, and encouragement. I hope you are feeling well this weekend!

          Liked by 1 person

          • I agree with you 100% – it isn’t always in the body and sometimes it’s partial and incomplete. I’m not healed and whole as I’d wish and struggle with anxiety and depression and absolute overwhelm and exhaustion which lead me to feel like a burden and difficult case for my family, so I need Jesus every moment. I pray daily for His grace to get through one day at a time, to give me the desire to persevere, etc. I love your heart.

            Liked by 1 person

            • Amen! Your reliance on the Lord to overcome your obstacles each day is a beautiful testimony.
              I believe He is using your life and molding your spirit. I have to believe, even in the worst of illness, or depression, it might be right where God can use us for His glory if we allow it. Just as you are able to minister to others online, and share your spirit with so many.
              I hope you are doing well today. I love your messages πŸ™‚

              Like

  6. Hi dear Mary, I was looking for a blog that would touch my heart about how I feel today, about falling yet again through the cracks of the system. That was bang on. Thanks! If I at least matter to a community out there, it feels better. Thanks for doing this, you are a gem.

    Liked by 1 person

    • Hi Clau, I’m so grateful you found me and decided to say hello. I’m so sorry you are struggling through the maze of healthcare. You have so much to give, you are still the same person. It’s so nice to meet you πŸ™‚ Mary

      Like

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