Reaching Out for Support with a Misunderstood Illness

© a rainbow at night

I was incredibly uncomfortable with the idea of posting this… So you know what that means: I must.

I wish I had companionship with other people who identified with my particular variant of living with disease. Diseases for which there are barely any doctors who can or even want to help you. For which patients have to help each other find physicians. Who have had to fight to find even a sliver of support because the public is so disastrously misinformed about the true nature of their illness. Who have had limited or no help from the same group of organizations that would otherwise smother you in understanding and compassion, had you gotten a more acceptable or understood disease.

I wish I knew of the other people whose diseases didn’t have a cure and who’ve also exhausted all of their treatment options; treatments that tiny organizations of doctors have had to figure out, mind you–sometimes at the risk of being jailed–because if we did things the government’s way, we’d already be dead.

Where are the other people who simultaneously are so happy to be alive, valuing life immensely, yet who are also exhausted with day-to-day living? Who understand my uncertainty about the future because they, too, may be redirected from even having one? And the grief… Oh, the grief. There is no turning back this time. I grow more fatigued, more nerves die, my pain meds become stronger, and on rough days–in rough patches–the grieving is literally all I can handle. And it’s incredibly difficult to handle, when I feel I have no one to talk to about this who understands. Where are the support groups for people like me?

It’s almost impossible to find someone who’s tried the fight against late stage Lyme disease, in particular, and come to the same wall that I have: The understanding that the treatments have a greater chance of killing me than the disease itself, and that despite the severity, I stand a better chance at having a life if I let go of the need-to-treat and focus on LIVING.

No, most people aware of having advanced neuroborreliosis–aware that they have ANY progressive illness, really–approach it with a “die trying” attitude, no matter what. That works for some, as I’ve said many times. But I have neither time nor valuable energy to invest in treating a disease that cannot be treated without bringing me down with it. It’s because I’ve watched too many people actually die trying, that I know better. I’ve experienced on my own and witnessed enough in others to know that–unlike the inspirational recoveries in Under Our Skin–some cases are too advanced to treat, and attempts to do so actually cause the disease to advance quicker because the treatments are so harsh on systems already worn down. I am one of those cases, and I am not making that “mistake” again. I barely got through the first time I “woke it up”: We’re talking brain damage, endocarditis, almost needing a heart valve replacement, being bedbound 98% of the day and being plugged up to an oxygen machine. I fought back against all of that, but now, even attempts to gently fix the parts that are worn down, have almost hospitalized me, for the umpteenth time. And I don’t want to be remembered and honored for fighting a disease until it killed me, I want to be remembered and honored for living in spite of one.

It’s not as easy as just finding support groups for other people who are Buddhist, or have myalgic encephalomyelitis, or chronic Lyme, or bartonellosis, or mycoplasmosis. I was once part of a Buddhist support group for those with illness, that tried to enforce a sense of general support instead of conversation about specific diseases. It worked very well when people followed that, but people bring with them all of their life experience and inherited coping mechanisms, for better or worse made amplified by their chronic disease, and it became difficult to enforce that rule without the group splitting into camps. Not very helpful, and it just added stress.

The M.E. communities are usually full of people who don’t even have M.E., but CFS, so they don’t actually live with my symptoms or prognosis. And the only community specifically for M.E. I ever found actually barred users from even mentioning Lyme disease. It’s not my fault I got both, and I need to be able to talk about it. Since a major part of M.E. is accumulation of infections coupled with an inability to fight them off due to reduced natural killer cell function, one would think it extremely important to talk about how to deal with this…? Let’s not even get into the fact that bartonella is more of a threat to my health than Lyme, because most people don’t even know what bartonellosis IS.

AND DON’T EVEN GET ME STARTED on the Lyme disease “support” groups. I am the horror story people use to scare others into getting treatment: Treat now, or the disease will turn into a serious, disabling condition and then it could be too late! Yeah, well…

And try telling those people that you’ve made the heart-wrenching–but I think very brave–decision to stop treatment, and it’s like you’ve told them you murder bunnies in your spare time. How can you do that? Don’t you know what will happen? There’s still hope, don’t “give up,” you’ve just done it all wrong, just try this, and that, and this…

I’m sorry my story scares you. No, we didn’t catch it in time. Yes, it is too late for either natural or pharmaceutical treatment to do anything (besides give me life-threatening herxheimer reactions). But my life still matters, and I still need support. And yet when I’ve reached out with a fragile heart, I’ve gotten judgment and condemnation instead.

For some reason, I had so much more support when I was still in treatment. Well, I’m still fighting for my life, I’m just doing it in a different way. 

It’s similar to when people with cancer realize they need or want to stop treatment and focus on life, and must tell everyone. It’s not always pretty, I get that. I researched a lot of support resources similar to this when I made my decision a year and a half ago, and it was extremely helpful… But I’m tired of researching help other people have gotten who aren’t me. Sometimes I don’t have energy to research support, I just want to talk to a friend who already understands what this is like and get things off my chest.

It’s essential for people with severe and especially misunderstood illness to build a support network, and the circumstances here are critically relevant to how someone experiences being sick in this way. Lately I’ve felt it particularly important to address this before things get more.. well, you know. But how?

So, if you understand this post, or know someone who might relate to it, please don’t be shy about sharing, commenting, or contacting me. To everyone else, thank you for letting me share my story.

a rainbow at night


ETA, 2014 August: This organization might be a start, for some: Online Patient Communities — National Organization for Rare Disorders (NORD).
ETA, 2016 Feb: Something of a miracle happened when my immune system started bottoming out due to my ever-growing infection load: My insurance approved me for IVIG, a $50k per year immunoglobulin replacement therapy for my primary immunodeficiency disease.
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20 thoughts on “Reaching Out for Support with a Misunderstood Illness

  1. Kit, I’m here. I am a hermit, not only irl but also online. I find it difficult to connect on a deeper level with people who have or say the have the same illness. It’s hard to find someone who doesn’t need 10 paragraphs of explanation about what that one symptom is that acts up now. There are times that I’m okay with explaining and educating but sometimes you just want to connect with someone who only need half a word and understands.
    One things I also noticed that if you explain to people what this cardiomyopathy is or what Bartonella or Mycoplasma is, next time it will come up they have forgotten all about it. At times that makes me sad or irritated or the worst indifferent. I notice that I no longer care if they get it or not. So much energy goes into explaining what it all is and how it hurts, I slowly stop doing that.
    I was diagnosed in 1984 with ME in Europe where it was a legit illness. Many of out group got ill only I ended up hospitalized. So i’m probably a bit older that you are and also had a lot of time to acquire a shit load of other opportunistic infections. The latest diagnose that I could add to my lists early this year is late stage Lyme, Borrelia with Bartonella as co-infection and Vasulitis. ‘Late stage’ meaning; sorry but no we can’t help you.
    The specialist did try to prescribe me 2 kinds of antibiotics but luckily my own doc disapproved, said it would kill me so, no thank you. At the moment my Mycoplasma is making my life miserable plus my cardiac problems.
    I stopped treatment a couple of months ago and did have some good weeks but as things go am in a relapse now.
    I haven’t looked at research in ages. Suddenly I realized it made me very depressed and even more depressed to read stupid research, like things that are really obvious to anyone, even healthy people.
    Like; researched shows that people with 4 nights of no sleep show neurological symptoms.
    Really? Seriously? And that’s where you spend a couple of grants on?
    What spoke to me on your blog what you wrote is; ‘But I’m tired of researching help other people have gotten who aren’t me. Sometimes I don’t have energy to research support, I just want to talk to a friend who already understands what this is like and get things off my chest.’
    I was like YES YES YES!! That’s it, that is me. I just didn’t have the words to write it down.
    Having severe ME(and lyme and Bartonella, Mycoplasma, Cnp, and all the others) is like being a rabbit, a rabbit that is pulled out of a hat by ‘organizations’ that use you for their own gain, getting political positions in panels etc. Makes me sick to my stomach, especially because these committees are CFS and have nothing to do with severe ME patients. Like you I don’t participate in forums or groups, there is always something that you have that doesn’t comply with group rules.
    I recently visited Joey Tuan’s HealClick. The idea is to make a profile and that by magic software you will be matched or can see which patients matches your symptoms. So you can hook up and discuss and support etc. I filled out a long list and I think you can guess the outcome? No one of all the thousands of patients matches my symptoms. What are the odds eh?
    Anyway girl, I’m here if you want to talk, send me a tweet and if I’m in a state of consciousness I’ll reply ;-)

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  2. Thank you for taking the time and the energy to write this. My best friend has M.E. and I want to do my best to understand what she is feeling, thinking and going through and be as supportive as I can and your blog helped.

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    1. And thank YOU for taking the time to comment. I’m sorry to hear about your friend living with this disease, but I am astounded that such a person exists who cares enough to read blogs to gain a better perspective and help one of us. You really are a gem. Your friend is a lucky one, in this regard.

      Kit

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  3. This is *such* an important post, and something I’ve been feeling for a long time. I don’t have Lyme, but as someone in the later stages of progressive ME, I’ve struggled with many of these issues myself. When I first decided to stop the endless search for treatments (after years of researching this disease, how it works, treatments on offer, and even trying to find the cure on my own), I received lots of negative feedback. People said I was letting the illness win, that I was choosing to just lay down and die. In truth, all I was doing was facing reality head on and working towards acceptance, which is a very healthy thing. The fact is, my body is extremely damaged. Even the most hopeful researchers and scientists place the type of technology needed to repair my body several lifetimes away. I would rather accept reality, no matter how difficult or ugly it may be, and learn to be happy in my present circumstances, making the most of every day, than live my life carefully monitoring every bit of energy output in the vain hope of still being alive when a cure comes around.
    It seems like society today is quick to rally behind those who fight their illness with treatments, but quick to desert those who choose to focus on having a higher quality of life for whatever time they have left. Just yesterday, I was watching a show on Netflix where a woman gets diagnosed with cancer. One of the lines a friend says in response to this is, “If anyone can beat cancer, it’s her. She’s one tough lady.” Beating an illness is rarely about how “tough” one is, yet this is society’s attitude (Netflix has an awesome documentary that addresses this, called “Pink Ribbons, Inc”). This can leave the sickest people out there high and dry with little to no support, feeling like a failure. It’s just not right.
    Also, I definitely understand the issue with so-called ME groups. I have yet to find one that is exclusively comprised of ME patients. Most are full of “CFS” patients who have nothing like true ME. Once, I got excited about one fairly well known group which claims to exist only for the most severe ME sufferers, only to find their Facebook group is also comprised of many non-ME CFS patients (all of whom get up in arms at the mere suggestion that the “CFS” they have isn’t the same as true ME, because they too need a place to belong, so they cling to ME groups regardless of their symptoms and history not lining up with true, neurological ME). No one seems to understand those of us at the more severe end of the spectrum, although plenty of people seem happy to hold us up as poster people – proof to friends and family that their disease is real, even if they never had actual ME to begin with.
    In any case, thank you sooo much for taking the time and energy to write this out, and having the courage to post it. I personally applaud your decision to focus on quality of life. Each person has to do whatever they feel is best for them based on their values and understanding of their disease process, and nobody should judge another person for making what is a very personal decision. I hope you know you can talk to me. I may not always be able to respond right away, but I’m here if you need to vent, and will reply as soon as I’m able. Btw, I don’t think we’ve exchanged email addresses yet, so if you ever feel inclined to shoot me an email, my addy is aroundwiththehound (at) gmail (dot) com.
    BIG hugs headed your way! You are someone I both respect and admire. Hang in there!

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    1. Hello Brooke, thank you for the spoons you’ve invested into this comment, I know they come far between.

      I’m really sorry anyone told you that you were “choosing” to have an awful disease such as M.E. destroy your every bodily function–that is emotional abuse as far as I’m concerned. From perhaps well-meaning people, but still.

      I can definitely understand your methods. I’ve had to throw caution to the wind and just live, regardless of fear of relapse because it just doesn’t matter anymore, really–I’d rather live shorter and full than a longer life full of only regret. That is not the point of being alive, if you ask me.

      It seems like society today is quick to rally behind those who fight their illness with treatments, but quick to desert those who choose to focus on having a higher quality of life for whatever time they have left.

      Absolutely!!! And thank you, I would LOVE to watch that documentary, maybe even tonight! ♥

      Aha, you are so right about some people with CFS using M.E. patients as posters for their own advocacy–oh look how severe it can be–then turning around and denying that M.E. patients even exist. I see this in the LGBT+ community, as well, where groups of LGB people claim to want equality for everyone, but then ostracize those who are transexual! I also love how you explained WHY people act that way, because that’s really what it is about–people wanting a place to belong. The truth of it is everyone SHOULD have a place, and it’s awful that the government in different countries have chosen to perpetuate the myth that two drastically different conditions are the same. It’s like asking people with cancer and pneumonia to find common ground and just deal with it, this is the best support you’re going to get–no one really benefits, and everyone is left more exhausted.

      I seriously cannot thank you enough simply for existing, and offering your friendship. I’m not sure if others without M.E. can really understand just how sick even the slightest thing can make us, and I’m really grateful you want to brave those waters to connect with the world, and people like me. You are also someone I respect and admire. I will forever be glad for our friendship. Thank you for the e-mail, I will add it to my address book, and it will come in handy when Twitter is too quaint, or I want to send links to just you!

      With Love,

      Kit

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  4. You have an amazing story. Which is not to say fun! I do not understand all the ins and outs of your disease or process. But I work with people who want to do exactly what you are saying. They want to thrive! Thriving means being empowered and living on purpose in the moment. Only you can define that for yourself.
    I live with chronic pain that has gotten better. But it is not the lessening of pain but my embracing what is that defines thriving for me. I believe that we can not do this alone. That community and support are essential. As a health coach and founder of Thriving with Pain, I have developed a process and framework that might be of service to you.
    I would love to do a complementary initial conversation and explore how we might work together. I work through email, phone, video conferencing and a website that has great resources. Just reach out and we can set it up.
    Here is to your peace of mind, your courage, and your support.

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    1. Hi Amber,

      I love the definition of thriving being empowerment and living on purpose, in the moment. That’s the only way I get through my days. I’ve already taken my life back, it’s the days when I need someone to talk to about the dark hours, that I am looking for. Hearing someone give me some sort of coaching or pep talk would actually make things worse, not only because it puts me in the position of “coachee” instead of on the same level as another human being, but because it would try to change what I am feeling into something I am not currently feeling, thereby invalidating my authentic self at that moment, which is something I will not tolerate. Still, thank you for reaching out. I’m sure you do great work for people who need what you are offering, and I know many do. That is just not the area in which I’m needing support.

      Kit

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  5. Dear Kit,
    Thank you for your writing – I am fortunate that after a very difficult journey with Lyme I am functioning again, but have a good friend who deals with chronic brain inflammation and great difficulty treating – like you, she has severe herxes. She and I have had talks about dignity and illness, and how the current medical/societal societal approach often erodes the dignity of people who are living life with Borrelia. Just wanted you to know that you are heard. Sending love…

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    1. Regina,

      Thank you for reading! I’m sending Love back to you right now. ♥ I am really glad to hear you are in a good phase right now, and there is a lot of Life you have still to enjoy. Similarly, my best friend is like you, and was able to beat it back enough to resume her life. My heart goes out to your friend who is struggling with treatment; should she ever decide enough is enough, feel free to send her to my site. I wish you both happiness and the strength to live an authentic life.

      Kit

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  6. Thank you so much for sharing your thoughts. I recently went off my treatment because I needed to get some things done that the continuous herx prevented me from focusing on. The herx stopped and primed with loads of ibuprofen I managed to finish these commitments. I am now at the point where I must decide what to do next…another round of antibiotics, more natural therapy, or nothing. I have to admit the feeling of control when one stops treatment is a welcome change over the continuous mind game of hoping for the cure. Because I am an optimist, I will likely start natural treatment again but knowing that others have the courage to stop fighting a losing battle will help me when I do decide: enough is enough! Thanks again!

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    1. Gredal! It is nice to hear from you again, friend. I’m so glad you were able to complete that phase of treatment! Every little bit helps, I’ve learned. Something else I’ve learned, in my particular case, is that it is somehow worse–when you have coinfections, at least–to treat a little bit, then stop before the infection has been subdued enough. This can actually wake them up and cause them to resume attack, so you have to be ready. I’m not sure if this helps your future decisions at all, but it helps me choose when to take antibiotics for other things, because I know it better be worth the risk of waking up these other beasts. Good luck with your natural treatment! I think the only thing worse than suffering from any progressing disease is to make yourself suffer even more with 10,000 “treatments” that actually make you wish you were already dead! Just not the kind of life I want.

      Stay in touch, xo

      Kit

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  7. Dear you,
    Thank you so much for writing this, and for sharing your very difficult-to-speak truth. I am not in exactly the same boat as you, but I genuinely appreciate your unique situation, and I am sorry for the hundreds of voices who make you feel like you don’t have the right to be exactly who you are – gravely ill, working hard to live with your situation, making the (non) treatment choices that best suit you in your situation. You are the expert on you, and I believe you are doing exactly the right thing based on the information and options you have.
    I don’t know what I can do besides let you know you are heard, and I will gladly listen to more. I can not provide you with the specific comradery you wish, because my neuroborrealiosis is not as advanced, not as untreatable. I am stuck in my own loop of partial recovery and relapse, which has its frustrations, but it is fundamentally different from your situation.
    You have a group of sisters and brothers – reaching out with such truth was brave and important.
    Fran

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    1. Fran,

      Your words have brought tears to my eyes. Thank you so much for sharing them with me. I think all ANYONE wants in this world is happiness and to know that they are heard, really listened to, and you have given me that gift–so thank you from the core of my heart.

      I do remember being on that treatment loop, and it has its own set of difficulties that are no less important to address. If things are still the same, I also remember that it was much easier to find support, then–I hope you have everything you need to continue your path, and I wish you many continued chances to Live and Enjoy.

      Thank you again,

      Kit

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  8. I’m so sorry that I haven’t been receiving notices in my inbox of your posts. I forgot to edit it so I would get your posts (and many others) immediately. All notices were turned to OFF. Sorry, again. I totally understand what you’re going through. My daughter has M.E. Not as severe as yours, but I know she appreciates the fact that I “get it.” So, she feels comfortable about telling me what her symptoms are every day; at least, when she feels strong enough to call me and talk. Thank you for your post.

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    1. Oh, sweet soul, please don’t apologize, I hope you don’t in any way feel responsible for this whole mess. I know what you mean, though, with the notifications getting turned around–often I’ve wondered if people fell off the earth when in fact I had just somehow unsubscribed from everything!

      I’m sorry you have to watch your daughter go through this particular illness. I think what matters in our soul’s journey here is not the illness itself but the lessons that we gain by experiencing the illness, especially diseases which are swamped in politics and controversy. You have to admit, it’s a very specific circle, we who have the devastating and also misunderstood. (Similarly, I think if we didn’t get M.E., we’d have gotten something else that would have taught us the same things… I think our souls are always trying to get the most out of every situation, here. I guess by today’s new age standards I might be viewed as a hippie, without the drugs and rainbow van.)

      But I’m really glad she has you to turn to–it means everything to have even one family member who is accepting of you, without trying to sway you one way or the other, just there to listen. So thank you for putting that out into the world–you matter so much. Thank you.

      Kit

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