This week I found out that I had failed the last available drug licensed for Crohn’s disease in my country. This means that I am now at the mercy of off-label treatments while waiting for a new drug to become available. This means, that while my gastroenterologist will try everything he can to improve my quality of life, I’ve now run out of options that are reasonably expected to work. For me, this means becoming used to a level of disability that I do not welcome for the foreseeable future.
When I shared this news with friends I was surprised by their responses. I’m not sure what I was expecting. I suppose I was hoping for a level of empathy and a feeling of support; I wanted to know I am not alone in this. I’m fortunate that some friends provided just that response.
But, overwhelmingly, I was met with “helpful” suggestions to cure my Crohn’s. These included:
“I’ve got a friend with Crohn’s and know it can be managed, is there a self-help group you could go to?”
This was coupled with a wealth of articles sent to me promising “cures” for my disease. Each cure was a medicine I had tried, an alternative therapy that had no medical backing (that I had likely tried, too) or some new diet. Instead of feeling supported, I felt dejected and alone.
1. It shows you are not listening to the reality of my situation.
If I come to you with my thumb cut off and you offer me a standard plaster, it clearly shows that you’ve misunderstood my situation. What I need is a lift to A&E and some pretty immediate first-aid.
When I come to you and tell you I’m out of treatment options, that I feel terrible and that I can no longer lead the life I previously enjoyed, you suggesting that I take essential oils is the same as offering me a standard plaster. It completely ignores the reality of my situation.
2. It subtly suggests my illness is my fault.
When you say “have you tried this diet, it cured this person” what you’re saying is that there is a cure and that if I tried this cure I wouldn’t continue to live with this illness. Crohn’s, like many chronic illness, cannot be cured. I can promise you, I have tried everything I can think of to improve my situation. Every single day is a battle to improve my health. If you knew how many things I have tried, elemental diets, liquid diets, FODMAPs, Lofflex, paleo, probiotic and a myriad of bizarre mixes prescribed by “nutritionists” you may not be so quick to suggest another “cure.” Trust me, I’ve tried it and whatever it is you’ve found will not cure Crohn’s. It hurts to hear the subtle suggestion that I’ve let half of my life be dictated by a disease when I could have just taken some omega-3 tablets and been fine.
3. It’s about you.
If I say your suggestion probably won’t help improve my condition and your response is to be hurt or offended, then that shows your advice was to make you feel better, not me.
4. It makes others believe your “cure” might work.
Unfortunately, people aren’t always the best at doing research. We all want to believe that people’s problems can be fixed quickly and easily — it makes us feel safer. So, when people see your post suggesting my illness can be cured by taking slippery elm, they may take a sigh of relief, because that’s one problem off their list. Your post can help perpetuate myths around chronic illness and mean more people fail to understand the impact and difficulties that goes along with living with one.
5. It moves the conversation away from my situation and into a conversation about the merits of your “cure.”
If I’ve told you some big news about my health, or even some small news, what I’m saying is that something is going on in my life and it’s impacting me. I’m reaching out, I’m asking for support. I’m trying to share with you what my life is like right now. Some days, support from other people is all that keeps me going, if I’m telling you things are getting difficult, that means that I might need help.
By telling me about your new “cure” you effectively shut down the conversation. I can no longer tell you about how I feel, because if I tried what you offered my problem would go away. Suddenly, I’m placed in a position where I can no longer expect empathy and a listening ear but, instead, must go off to Holland and Barrett to buy a case of turmeric pills.
6. It puts more economic and emotional strain on me.
Life costs me £550 more on average a month as someone who is disabled. Costs come from being unable to work, requiring specialist equipment, maintaining a specialist diet and from the costs of medicines and travel to appointments, to name a few. My finances and physical resources are spent on getting myself better. I see my consultant, my GP, I cook meals that I know I will be able to digest, I try and walk each day to stay healthy. They may seem like small things, but when you’re sick for a long period of time and suffer from fatigue, each little action takes a lot of effort.
Your suggestion might seem easy to fulfill. Just another diet, just some more pills, just one more appointment. But, on top of what I’m already balancing, it may be incredibly difficult for me to include into my life. I may not have the money to fund it. Importantly, I may not have the emotional energy to invest in another “treatment” that I know is unlikely to work.
7. It reminds me of how alone I am in this.
For me, what stings most about the advice I get is that it shows how little you understand my condition. Do you know what it is? Have you bothered to google it? When you suggest crystals to heal my Crohn’s, all that shows is that you fundamentally do not understand what I live with day by day. When that comes from a stranger, I can handle it. But when it comes from a friend, from someone who claims to care about me, I don’t understand why you haven’t tried to learn about something that has changed my life so much. If you want to learn, I can tell you. But when you offer advice that clearly demonstrates you are ignorant about my condition it reminds me that I’m alone; because the people around me don’t even understand the basics, let alone the complexities, of this disease.
But, like I said earlier, I have got some amazing friends and family who do make a difference and offer great support. I wanted to share what they do and why it works, just in case someone else might benefit from their knowledge.
1. Listen to what I’m telling you.
In order to support someone, you have to understand what they’re facing. There’s only one way to do that: listen to them. That means, listen to what they say, ask questions to clarify any misunderstandings and then listen some more. Once you know what their situation is you’ll be in a much better position to help support them.
2. Learn about their condition.
Chronic illnesses can be complex. There’s a lot of medications, a lot of technical terms and a lot of bad research. It can be overwhelming navigating everything and it’s likely your friend or relative has been handling all this on their own. Become your friend’s research ally. The internet provides a wealth of brilliant and terrible information. Learn to be discerning. If they think it would be helpful, ask your friend to tell you what’s going on with their illness so you can find out more about how their illness affects them. Gain knowledge, weigh the evidence and learn to differentiate between sensationalist media and information that may offer real help. Information is power.
3. Offer practical help or support.
Living with a chronic illness is tiring and stressful. It’s isolating. Each day I fight my body so that I can look after my basic needs. Cooking, cleaning, and keeping myself sane is about all I can do. I may look like I’m functioning well, but it’s taking everything I have to maintain that illusion.
You can help! Ask me what I need. Find out what I can eat and make me a meal. Come ’round mine and watch rubbish movies with me. Offer to come to appointments. Take me to the shops. Even sending me a nice message over Facebook or a letter helps enormously. Anything that helps me feel cared for and supported is immensely appreciated.
4. Accept I may not get better.
This is a hard one, but you may need to accept I may not get better. This isn’t a sprint, it’s a marathon. If you want to be in my life, you may need to learn to be a friend in a different way. There may never come the wonderful day when I have energy, when I can be what I once was, when I can offer the same practical support to you.
But, my life still has meaning. I can listen to you, I can still be fun, I can offer a different insight in the world. I hope I’ll be better one day, but I might not, I’ve accepted that – you need to, too.
5. Remind me that I am so much more than my illness.
My best friends, the ones I love the most, find ways for me to enjoy the world around me. They see what I’m passionate about, they see my limitations, and they find a way for me to enjoy my passions while acknowledging my limits. They get in their PJs with me and eat ice cream while we discuss politics and books. They plan trips in advance so I can make sure I have everything I need. They take me out my bedroom and into the big wide world. They remind me of my humanity.
I love these people. I wouldn’t continue to survive without these people. If you can, be that person to someone. I promise, it’s worth the investment.
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