"Suffering the Slings and Arrows of Outrageous Fortune"

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You would think it would be obvious to me, of all people and after all we have dealt with over the past 5 years. It should be obvious that you can’t ‘see’ an invisible illness, right?

EmilyAnd it is, of course. As a parent of a medically complex teenager who lives with Ehlers Danlos Syndrome and POTS and a host of other things that haven’t quite been given a label, I am too familiar with the concept that my kid is ill in ways that even the doctors can’t see. I have felt the questions behind the polite smiles that come after I have explained Emily’s medical issues, when that person catches sight of her smiling and laughing and looking oh-so-normal. I see the doubt that dawns when well meaning friends and family wonder if she is really quite as ill as I claim she is. Because, how can she smile, laugh, walk, play if she is really in so much pain?

I understand those doubts, even when I am annoyed by them. It is all part of the process of spreading awareness and educating people who are not trying to be mean but are facing the equivalent of a calculus equation in a social interaction. If you don’t live with chronic illness, you just don’t get it.  I understand that. I have no problem explaining it over and over and I have been a willing advocate from the moment we put a name to her symptoms.

And I have never once, not for a single moment on this journey of 5 years, doubted what I could not see. I have been bemused, but I have never doubted her experience. I think that is because it really isn’t invisible to me: I see the pasted-on smile, the pallor, the way the pain shadows her face as she tries to ignore it, the blank look and glassy eyes as she starts blacking out and I see her energy draining like a low battery as she fights to appear normal. It isn’t invisible to me, even though it is to everyone else. In fairness, I know what all of those signs will result in: utter exhaustion and perhaps days of recuperating from what any other teenager does all day long, every day. I do not doubt because I see it when others do not.

I get this no-man’s-land of invisible illness, really I do.

But, even a veteran like myself can be reminded how insidious these hidden conditions are in a simple, matter-of-fact conversation…

My daughter’s CRPS (Chronic Regional Pain Syndrome, also known as Reflex Sympathetic Dystrophy or RSD) has returned and with a vengeance that is frightening: it has spread to her whole body in a couple short months. If you are unfamiliar with CRPS/RSD, it typically appears after a minor injury or surgery and is extremely painful. It is the most painful condition known, rating a 46.5 on the McGill Pain Index, considerably above first time, unprepared childbirth at and cutting off a finger. Think filling your limb with lighter fluid and setting it on fire and it never burning itself out. There are some visible symptoms that go along with it but, of course, you cannot see the horrific pain.

She had this once before in her foot 5 years ago. It was excruciating. She couldn’t bear to wear a sock or shoe and couldn’t walk on it. It actually put her in a wheelchair. The whole concept of chronic pain was relatively new to her then. She had been in a lot of pain from EDS for months but the CRPS pain was so extreme and so horrible that she couldn’t ignore it.

Fast forward to this new round of torture. I believe her. 100%. I am her biggest advocate and she has my solemn promise that I will never stop seeking treatment for her. But, it occurred to me that, perhaps, compared to the first round of CRPS, this round was just very unpleasant because it was all over, instead of just in her foot. Because she informs me of how things feel but she doesn’t complain. She doesn’t cry or scream or shout about it. She pushes through, knowing that she can’t give in to the pain and that staying in bed is the worst thing she can do. In short, she doesn’t show her pain, even to me. When she talks about it, it is typically very factual, informative and brief.

So, I asked her, the other day, as we walked together, “Is this pain less than it was the first time?” I thought I knew the answer because, logically it had to be, right? And, honestly, because I wanted it to be so.

She thought a minute, shrugged her shoulder and quietly said, “It’s worse.” She walked on, leaving me stuttering and a bit flabbergasted. I caught up with her and said, ‘But, last time, you couldn’t walk. You couldn’t stand a shoe or even a sock on your foot.” I remember staring dumbly at her shoe encased foot, as I said this, trying to make my brain understand. Again, she just shrugged and nodded and walked on.

And my brain caught up. She has endured so much pain over the past few years. It has been managed but it never goes away. When you live with constant, severe chronic pain, you learn to bear the unbearable. That first round of CRPS was unbearable to her, but, now, years later, she is prepared to face much worse, stoically and with a poise that belies her age and situation. So, the answer is, of course, yes, it is worse. Yes, she can wear a shoe and walk, because she has learned that she has too. She understands that this pain is lying to her: it is not a signal of damage so she must push through if she wants to defeat it.

It doesn’t matter if I can see it or if anyone else can see it. It is real.

But, if I, her biggest believer and advocate, can be confused and deceived by the false appearance of ‘”normal”, of course, other people – friends, family, doctors, therapists – can be deceived as well. Some disabilities are invisible and they are no less real because someone else can’t see the pain. People like Emily hide their pain because if they wore it on their sleeves the weight of it would make them collapse. People like Emily smile to shield their loved ones from the knowledge that they suffer profoundly. People like Emily push through because they have no choice and they push through even though it is agonizing. People like Emily bear the unbearable with little help from medicine or society.

This is why I fight for awareness. Because even when you live with it, it isn’t easy to understand.

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Comments on: "Why I Fight For Invisible Illness Awareness" (11)

  1. Robin said:

    Thank you so much for this thoughtful article. I appreciate it so much. Is it possible for you to e-mail me? I would really appreciate talking to you. Thank you.

    • Thank you.

      You are welcome to email me. (I will undoubtedly forget if left to my own devices, so shoot me an email and I will get back to you. I have been awful about approving comments here and returning emails but since I replaced my old dying computer, I will get back in the swing of things!)

  2. Charlene Barnes said:

    Amen. Our pain is invisible, but same as she, I have no option but to push through it. As long as I keep busy, it helps me to push through it. I have to many people in my family and some friends that depend on me, so I can’t give up, nor show how much pain I’m in, or they will feel bad about me helping them out. Your a great Mom, that cares so much for your daughter. I gave HEDS to my daughters. My 39 year old is in a wheelchair, and lives 500 miles away from me. I encourage her by phone and I have to be strong for her and my other 3. Also, I have Grandchildren with EDS also. We didn’t know we had it until about a year ago now. I’m trying to educate myself on it, for them, to hopefully get them them the proper treatment.
    Keep this blog going and my prayers are for you and your daughter. Thank you so much,for sharing your life with us.

    • I would encourage you to not dwell on “giving” EDS to your daughters. You are as much a victim as they are and didn’t intentionally give them this challenge. I know it is hard but please don’t beat yourself up over this – medicine has failed you and them and that is not your fault. I believe with my whole heart that the kids who get a diagnosis early now will have a better prognosis than you and your daughters. Hang in there – keep educating yourself and we will all push for awareness so the next generation will be better off!

      Thank you for your prayers and your kind words!

      • Charlene said:

        Thank you for the encouragement. Since I last posted, we have found out that the EDS not only comes from me, but my children’s father, which probably explains why my 39 year old daughter is so bad. He has Hypermobility and Vascular, and his siblings. My oldest daughter talked to him on Sat and he had no idea that it was called EDS. He is the baby of 6 kids at 68 years old. My daughter went through family history with him and was shocked, as was I. Most of his family is living and mine isn’t, so he can go back quite a ways. Of my 3 daughters, she is the only one that talks to him, on occasion. We have been divorced for 25 years. My 39 year old only lives 15 mins away from him, but he won’t help her out. He prefers his stepsons over his daughters. I’ve asked him to help her but he says he doesn’t care. It is sad.
        I’m having my left knee replaced again on Nov 2nd. The Dr that did it on March 30th, only put a Partial in me and suddenly retired. He left all the arthritis in me and with the HEDS, the partial is sliding and the knee is very inflamed and PT loosened the rods in my Rt SI Joint. I don’t know why the surgeon only put a Partial in me, as he knew I was Hypermobile. My new surgeons feels confident, that he will be successful in putting a full replacement in me, with no complications. I want this to be true but will have to wait and see. Leg is full of fluid and locks up, because of bad implant, so I don’t have a option, but to do surgery.
        I will keep you and your daughter, in my prayers. RSD is no fun, and very painful. My best friend has it in her feet and it is now spreading. Many (((HUGS))) to you both.
        Charlene

  3. Mary Sue Claus said:

    Well stated! And thank you for working to raise awareness. It seems impossible for people without these health issues to understand. I pray you and your daughter are able to uncover some answers and garner the caring and help and hope that will make a positive difference.

  4. Hello,

    I am sorry to hear what your family is going through. It’s to imagine watching your children go through something like that.

    I developed RSD after an injury. I was lucky to get a diagnosis before too many months went by, and it improved a whole lot. I do okay now if I am careful.

    I suspect I may have hypermobility EDS as well. Had no idea there might be a connection.

    In the last couple of months, I found out that RSD may be autoimmune. I found out about several possible treatments.

    IVIG.

    http://www.emaxhealth.com/1275/82/35485/new-treatment-complex-regional-pain-syndrome.html

    Bromelain and/or proteolytic enzymes.

    http://www.google.com/patents/US20090324730

    Low dose naltrexone.

    http://link.springer.com/article/10.1007/S11481-013-9451-Y/fulltext.html

    Curcumin.

    It reduces TNF and interleukins, but I was told you’d have to take more than what is recommended on the labels, and to consult with a doctor.

    I think IVIG is expensive, but curcumin and enzymes are affordable.

    My doctor has just started me on low dose naltrexone. I will try to come back and let you know how that goes.

    • Thanks for the links! We are hoping to get Emily on LDN – I have heard great things about it and it is definitely worth a try! Please do come back and let me know how it goes!

      Right now we are in a holding pattern while we wait to get to a doctor for treatment (we couldn’t get an appointment until the end of January), everything hinges on what treatment is offered then. In addition to the links you shared, I have seen really interesting information about scrambler therapy (http://cprcenters.com/therapy/), ketamine infusions, transcranial magnetic stimulation and Hyperbaric Oxygen Therapy.

      It is all so frustrating and overwhelming but there are treatments – we just have to get to them!!

      Thanks for commenting and sharing information.
      Beth

      • Hi Beth,

        You’re very welcome. RSD is super tough to deal with. But don’t give up hope! I have improved a whole lot. There are actually times when my foot doesn’t really hurt, and it even looks normal most of the time. It never feels normal, but I will absolutely take some mild discomfort! The very highest the pain has been in the last few months is probably 8. Which is a huge difference to 10. I tend to view my personal pain scale sort of similar to the Richter scale. 🙂

        I believe there is always some underlying reason for health conditions, even if most doctors say, “We don’t know what causes it, and there is no cure.” If we can find the reasons, we can do something about it.

        You may try looking for a functional or integrative medicine doctor if you want to try to get LDN before your Jan. appointment. My current doctor does a bit of both, and she prescribed LDN right away when I mentioned it.

        Thank you for letting me know about those therapies. I don’t do well with medications.
        I remember reading good things about the transcranial magnetic stimulation several years ago. I’m going to look up the others you mentioned.

        I will pray for your family. You were already dealing with so much. It is absolutely true that you cannot ignore RSD. At its worst, it really is magnitudes above other forms of pain. And it is so difficult when others do not understand. Even loved ones have said terribly hurtful things like, “Everyone else I know with health problems just gets over it!” Thank goodness that person eventually “got it”.

        Wish you the best.

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