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Desperation, “Miracle Cures” & Hope in Chronic Illness

hope-chronic-illness

I have been reading an increasing number of articles recently about the role of alternative medicine in the treatment of cancer. The conversation seems to have exploded in the wake of the tragic death of “Wellness Warrior” Jess Ainscough and the outing of supposed cancer survivor Belle Gibson.

On both sides, the arguments are passionate: the naturalists believe that society has led us astray from our bodies innate ability to heal itself due to the power of the corporate beast, while the scientific community laments the so-called snake oil salesmen that offer their tinctures and coffee enemas with little evidence to back up their claims.

I’ve been following these debates with increasing interest. The discussion often leads down the winding road of the “gullible and idiotic” people that fall for the allure of natural cures. While I’m lucky to not be a cancer sufferer, I know what it’s like to be desperate to find something that will make you better. No matter what that is.

And I think this is what it comes down to. Desperation.

Illness, no matter what it is (and I can only talk about my own personal experiences here), is terrifying. I grew up in a family that never went to see the doctor for just any cough or cold, but we grew up to respect and trust that our medical practitioners had our best interests at heart.

I’ve got plenty of misgivings about many of the doctors I have seen over the years (and trust me, there have been more than I can count). The arrogance of some, and their inability to listen to me at times has left me storming out after the appointments, shouting down the phone at my mother about how useless everyone I saw was. What this has ultimately come down to, though, is that they haven’t been able to help me. Is that their fault? Up to a point. Not listening, certainly. But also not really. There’s only so much that has been figured out about how to help people with my illnesses, so once they reach the point of trying everything known in their arsenal they’re kind of stuck.

I do strongly believe that I (and many people I know) have been prescribed unnecessary medication (I’m still living with the aftermath of a particularly horrific experience on anti-depressants) and that too often the prescription pad is the first port of call. Please note here I am talking about my conditions and not cancer. If I had been encouraged to try and find a different therapist or start practicing mindfulness before being prescribed anti-depressants, I may not have the leftover mental trauma that just three pills gave me.

A lot has been made of the fact that I don’t take pain killers for my EDS. The reason was that they don’t really take the pain away. Something, I learned when I was diagnosed, that is quite common. So I stopped taking them in my mid-teens. What was the point if they didn’t work? Coming to the development of my newer problems, while many of the medications I tried made me significantly more unwell, even with dietary changes, I needed to stay on my blood pressure medication for quite a while before coming off of it. Again, I can deal with my PoTS symptoms well enough that I don’t want to have to endure the symptoms that came with side effects. Not everyone is in this position. Roundly demonising medication and medicine is an incredibly dangerous and unwise thing to do. I am particularly sensitive and if medication has been prescribed it is done so for a reason and should never be something thrown away lightly.

Last year when I had convinced myself that diet was my silver bullet, I put absolutely everything into it. And, as I’ve written many times before, for quite a while I saw what felt like miraculous changes. My body did respond extremely well and it became an important way of managing my symptoms. I had more energy, was able to work, and do more than I ever thought I’d be able to do again. But I think it’s important to remember that for many people, diet is not a cure.

During this period of time I started reading more and more about natural medicine. The changes I was feeling from building my body up through diet was enough to convince me that I’d cottoned onto something amazing and started feeling shocked and angry that this was roundly ignored by my doctors. Despite my rational and questioning mind, the orthorexic, desperate to find something, anything, that would work Natasha started winning out. In a dream I even got annoyed that my company health insurance wouldn’t cover juicing therapy. Because, duh, green juice cures all.

I am not denying in any way that diet and lifestyle plays probably the most important role in managing my conditions. But in my desperation I believed that the information I was reading on any old blog by any old person who had ‘healed’ themselves was my missing link, even when none of these people had the exact same problems that I did.

And even now, part of me is still willing to try anything in my desperation to feel better (huh, as I wrote that a slight tear fell down my face…I really, really want to feel better). I went to see a homeopath who prescribed me things that, upon research, were described as “dangerous” by medical websites and was pretty dismissive of any questions I had. My instinct told me to not even go there. I was confused as to why I even went to see him. I could answer my question in one word. Desperation.

I know that if I’m not super aware of what I eat, how much I exercise and how I manage my stress levels, my health declines significantly. But I’m finally coming to realise that sometimes it just does and there’s no rhyme or reason for it. And while it sucks, that’s just the way it is.

Ultimately, you are the one that knows your body best. Diet and lifestyle are a huge thing to take into consideration when you’re trying to figure out how to live with chronic illness, but it’s so important to become scientifically literate, and try to learn not to let your desperation overcome your critical thinking abilities.

Is it being negative to accept that there are some things we cannot change? Some people have told me that it is. Apparently my inherent belief that I can’t be cured is the very reason that my illnesses haven’t spontaneously disappeared into the cosmos. However, I would argue that there is a significant difference between being negative and being realistic. And sometimes when things are extremely difficult being realistic is a really hard thing to be. Hope and faith are powerful motivating forces, but what worries me is when those forces can start being counter productive. Do I hope that I can feel better than I do? Of course. Do I have faith that I will be? Yes, to a certain extent.

I hope that I will not feel that the way I do right now for the rest of my life. I work hard every day to keep finding ways to support and manage my body. I believe that I can continue to keep learning and experimenting to achieve this goal. But believing that “cure” or total domination is entirely in my hands actually made things worse when I would have a flare up. There are things that are beyond our control, and even now when I have a bad day my brain still tells me “you’re not eating the right thing! You’re doing something wrong!” I have never blamed myself for my illnesses, but part of me now (despite knowing better) still blames myself for not curing myself for something that ultimately (as of yet…come on science!) cannot be cured.

Please, please, please be wary and sensible about what you read on the internet. Never attempt anything (especially when it comes to taking potent supplements you find online or just stopping medication) without speaking to your doctor. I know, I KNOW what it’s like to want to find an answer. But please make sure anything you try you do it in a safe way. We are all different, and while a little bit of hope is so important, we always need to be realistic and cautious about what we read and how we approach our health.

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9 Comments

9 Comments on Desperation, “Miracle Cures” & Hope in Chronic Illness

  1. Paula
    August 10, 2015 at 3:06 pm (2 years ago)

    Having been a raw vegan for five months and feeling like I used to, loads of energy, pain gone. I started to reintroduce some cooked veggies, buckwheat noodles and a small amount of raw cheese and I had a major relapse. Bedridden for weeks. Totally floored me and that feeling of desperation fully understood. I have tried it all over twelve years and all down the alternative route. The worst experience is getting well and then losing it all over again which is like being newly diagnosed and there are no words to describe this. I thought I was ‘cured’ and going back to work.and it is so not happening again. Friends said I was in remission but I felt so well. It can be very cruel sometimes. The worst part is being judged for something I never asked for and feeling like a pariah on society. That is what hurts the most…

    Reply
    • Natasha Lipman
      August 10, 2015 at 4:06 pm (2 years ago)

      Flare ups when you think they’re behind you are the absolute worst :( I think when it comes to feeling judged, I’ve got to a point of saying “fuck it”. If people don’t get it, they don’t get it. That’s partly why I write – so that people hopefully will one day!

      Reply
  2. Erin
    August 10, 2015 at 3:55 pm (2 years ago)

    I was just talking about this the other day with my husband – how the wellness industry makes people feel like failures for having cancer and/or being unable to cure it naturally. Sending the message that it’s all within our control and that we should be able to cure cancer with a high dose of Vitamin C and green juice undermines the reality of the disease (at least in some cases). I started falling into this trap myself with my EDS and then came across one of your posts in which you mentioned green juice/food cannot repair faulty collagen. It was an Aha! moment. I am not a failure because I can’t make my EDS go away with food!

    Reply
    • Natasha Lipman
      August 10, 2015 at 4:05 pm (2 years ago)

      Yes, exactly! There’s no denying that eating well and doing all the ‘wellness’ things can play a huge role in my ability to cope and the level of severity of my symptoms (sometimes) . There is that feeling of blame and guilt that comes along with it, that only makes things worse. But that was my aha moment, too! That until research tells me that something can change the structure of my collagen, I’m never going to be fully cured…and that sucks but it’s how it is. It’s sad and dangerous when people just try to convince you otherwise!

      Reply
  3. Jennifer
    August 10, 2015 at 5:42 pm (2 years ago)

    Really interesting blog today so thank you. I have started falling into this trap in desperation but not necessarily to find a cure (although that would be fab!) but just to feel well enough to enjoy life again. I have in the last few months seen a homeopath, a nutritionist and bought a nutribullet. The latter is till in the box as I can’t be bothered to work out what to do with it. The nutritionist thinks I should follow a blood group diet and the homeopath gave me amongst other things a liquid that tastes like watered down brandy!!! I think I have been duped and feel even more of a failure for believing them!

    Reply
    • Natasha Lipman
      August 10, 2015 at 5:50 pm (2 years ago)

      Thank you, Jennifer.

      Yes, exactly! It’s just wanting to be able to *do* the things you want to do. It’s super hard with everything that’s out there to try and figure out what’s right when there’s basically people shouting at you from all directions. Please, please don’t feel like a failure. I think it’s something that most of us go through, and in the end the most important thing is we come out of it realising that we’re the only ones who can ultimately decide what’s right for us!

      Not gonna lie though, I did love my nutribullet before I upgraded 😉

      Reply
  4. Sarah
    August 14, 2015 at 2:21 am (2 years ago)

    Hi Natasha,
    I find your blog so inspirational, and while I don’t have the same chronic illnesses that you do, I feel that I can relate so strongly to some of the things that you’ve been going through. I’ve been in a flare up with my Crohn’s disease for about a year and a half now. I became obsessed with the idea that food could cure me, so I tried everything. I tried juicing, I tried ketosis, I tried intermittent fasting and everyday I was watching documentaries, reading books and reading blogs about how people cured their illnesses. One day I came across your blog and immediately I could relate to your posts on how people talk about food in a dangerous fad manner and how diet doesn’t necessarily cure everyone. This idea really resonated with me. I was so hard on myself when I would slip up on my various diets, feeling as though it was my fault that I wasn’t well. That if I just had a little more self-discipline, I would be okay. Well even during periods when I was at my strictest, since Dec. 2013 I’ve been consistently hospitalized about every 6 months or so for a week at a time. I finally came to realize that maybe diet alone just wouldn’t work for me. Though I hate being on medication that increases my risks for worse things like cancer, I can’t keep living with bated breath for the next time I’ll end up in the ER. I’ve been on medication for about a month and a half and while things seem to be okay, dealing with the side effects of these meds can be brutal. But again, reading your posts on how you need to be your own health advocate has really helped me realize that it doesn’t have to be just diet or just meds. I can incorporate the things I’ve learned about diet while being on these meds. My doctors always tell me that diet plays little-to-no role in managing Crohn’s disease (a digestive tract disease…fancy that) but I know thats 100% wrong in my case. When I eat poorly, I get worse and if I eat well, I feel better. But it doesn’t mean I don’t need these meds. My wish is to one day hopefully be med-free and healthy. Anyways, this comment was a long-winded way of saying, thank you for writing with such honesty about things that people with chronic illnesses face and deal with on the daily. -xo Sarah!

    Reply
    • Natasha Lipman
      August 14, 2015 at 9:33 am (2 years ago)

      Hi Sarah,

      Thank you so much for your comment. I’m really glad that my blog resonated with you!

      I think it’s one of those things where we all have to go on a journey (ugh) to figure out what is right for us. It would be too easy if there was a prescribed way, right? 😉 Those ups and downs, while incredibly difficult, always end up teaching us something that makes the next time a little bit easier to manage.

      I hope that one day you do manage to be med-free and healthy, but in the meantime, I hope today is as good as it can be! N xx

      Reply
  5. Handyortung
    September 3, 2015 at 5:03 pm (2 years ago)

    Natasha Lipman, who chronicles her experiences with living with a chronic disease far more eloquently than I ever could. She writes about how when we have a long-term illness, we search for any kind of miracle cure in the bid that we will get better.

    Reply

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