It seems that another post about what not to say to people with illness and disease is needed, because another week has passed, and I am still receiving messages and comments filled with unrealistic suggestions and incorrect statements about how to deal with my issues. From strangers, mainly, no less.
Since I have been dealing with 2 recent diagnoses, I have shared a lot of information about myself, our Infertility, and, my Crohn’s disease – Update: I FINALLY see my fertility doctor and occupational therapist this afternoon! (See My Crohn’s Journey & Infertile Myrtle)
I have also shared what not to say to people struggling with similar diseases or illnesses, and yet, some people still go out of their way to offer up suggestions for me to ‘try’, opinions on what I am doing wrong, and ‘solutions’ for my issues. (See 3 People You Meet After Diagnosis)
So, another post about communication etiquette, from my point of view, is warranted.
Number 1: You Need To Relax
This comment makes me beyond livid, every time I read it or hear it.
Not once have I ever went into the doctor’s office and they suggested that I ‘relax’ to heal my problems. Not once have I been told that ‘relaxing’ helps those who have been medically diagnosed with these diseases or illnesses. If it were that simple, there wouldn’t be doctors still searching for a cure — Crohn’s Disease does not have a cure. I’m sure my doctors would avoid all this medication and repeat scoping if this were the case. No, ‘relaxing’ is not going to heal my issues.
And as for Infertility, not once have I ever read about a couple diagnosed Infertile, or a couple needing possible IVF, that was told ‘relaxation’ would help. Relaxation isn’t going to help a sperm count. Relaxation isn’t going to help blocked tubes or hormone imbalances, and it doesn’t help you ovulate regularly. Relaxation is not an added ingredient in the petri dish mixture of egg & sperm cocktail. Relaxation will not help women miraculously conceive and it will most certainly not place a child in my arms.
Relaxation does not fix these issues. Stop offering this up as the cure-all.
Number 2: Everything Happens For A Reason, It’s All In God’s Plan &
Have Faith, It’ll All Work-Out
No, I am not the most religious person. I am not baptized and I do not regularly attend church beyond holidays, but, I do know that I cannot blame ‘Him’ for my issues. Sorry, but that’s not how illness works.
By telling me that everything happens for a reason, it gives me the impression that you blame me and my choices, and that you feel I did this myself. It makes me think that you believe I deserve what’s happening to my body. It gives me the impression that it’s just meant to be in your eyes, or that if I wasn’t such a ‘sinner’, then I wouldn’t be sick at all.
I mean, don’t you just love when people go out of their way to blame you for something that’s out of your control? Or when they try to find ‘higher reasoning’ for what’s happening? Me too – so why don’t you tell someone, like me, who’s been living with this for years, the ‘higher reasoning’ for why I cry about my issues every day? Or maybe you can tell me the ‘higher reason’ for why one of my biggest dreams will never be fulfilled? Maybe you can tell me the reason my body hurts on the inside, or why my skin breaks out and why I feel nauseated all the time? Or maybe you can tell me the ‘higher reason’ why food, my favorite thing, seems to be my nemesis?
If you really think there’s a ‘higher reason’, then why don’t you enlighten me on why I deserve this, or why it was ‘meant to happen’? (Please don’t).
While I appreciate your prayers for me, please don’t ask me to ‘find God for healing’.
Number 3: It Happened To My Stepfather’s Brother’s Wife, So I Understand
Unless you have spent time actually researching my specific issues for yourself, you really have no idea what is happening inside my body, only and idea to compare it to. Just because your stepfather’s brother’s wife had Crohn’s Disease or a cousin of yours was ‘Infertile’ for a year, this does not mean you know about what’s happening in my body. You’ll never fully understand unless you experience issues of your own. This is why I share my story, so others can understand my version of these issues, maybe you should read it. (See My Crohn’s Journey, No Little Lambs, Infertile Myrtle)
I do understand that you may be ‘just trying to help’, but if you take the time do the research, even just a little, you will see that every single person with Crohn’s Disease has different symptoms. No two people will experience the same symptoms, the same flare-ups, or, the same medical treatment. That’s why it’s so hard to diagnose and that’s partly why it took me, and my medical team, 2 years to diagnosis my symptoms.
Number 4: Have You Tried This? Could It Be This/That/The Other?
Just because one person has symptoms related to gluten or spicy food, it doesn’t mean another will. Just because one person has issues related to dairy or sugar, it doesn’t mean another will. This means that the treatment’s that have helped your family members, may not necessarily help me. Finding the right care for yourself takes time, doctor’s opinions, and a lot of testing medications, some that will fail.
While I appreciate the offering of new information, this isn’t a new illness for me. As someone who has been dealing with Crohn’s Disease and Infertility for years now, if there’s an article, a website, or, any other information available about the cause, you best believe I have seen it, screen shot it, sent it or saved it. I want to know it ALL.
As I discussed in My Crohn’s Journey, when doctors give me any information about a new diagnosis, I made sure I WebMD the hell out of it. – I know, I know, I’m not supposed to be on WebMd – but I spend the next week researching any details I can, looking into any symptoms, tests or details available. I like to go back to the doctor with more knowledge about the process than they have. (See My Crohn’s Journey)
I sometimes feel I could teach a course on GI issues and Infertility processes because I do So Much Research on them. Do you need a colonoscopy? I have some tips. Not sure what testing needs to be done? I do, I’ve done it all. Where can you go to get information on it? I have a few links I can send you.
Although some of these messages with ‘try this’ or ‘try that’ may be genuine and truly offered with sincerity, I thank you, but I am good. I am OWNING my Crohn’s Disease and Infertility. I have done the research on my issues, and any questions I have will be discussed at my next doctor visit.
Number 5: It’s No Big Deal, Calm Down
This one hurt’s the most, to know your issues are not a high priority. When you tell me my issues are ‘no big deal’, what you’re really saying is that they are no big deal, to you. Coming to that realization, that your issues don’t matter, it hits you like a brick wall.
When you tell me that my problems are ‘no big deal’, what you are really saying is that I am not important. You are really saying that my feelings are not validated and that my emotional and physical well-being should be overlooked. You are saying that you cannot be bothered to care about what happens to me, or what happens or my body. What you are really telling me is that you don’t care. Period.
When someone you know is diagnosed with an issue or disease, you Do Not tell them ‘it’s no big deal’. Instead, you offer up your support, kindness, and hope. Whether it be family, a friend, a coworker, you always give your undivided attention to that person, because their issues are important, life changing, and most certainly, a big deal.
Imagine your life with them; imagine how they affect you, and how they affect others. These diseases and illnesses don’t just happen, they happen to you – you do not get a choice.
When you tell me ‘it’s no big deal’, you are showing your true feelings – that I don’t matter. When you tell me to calm down, you are minimizing my problems and taking away the reality of just how negative my situation is. By telling me to calm down, you are telling me my issues are of no importance, that they don’t even validate emotion. But if it was you, you would be angry too.
In my case, I have two diagnosed issues to dwell on daily, and I feel I have every right to be upset. I can be angry because they are a big deal to me. They are a big deal to my family and my future. These are issues I am going to have to live with for the rest of my life. I have every right to be angry, I have every right to worry about what’s next, and, I have every right to dwell on my symptoms. Why? Because they affect every aspect of my everyday life.
But, I do thank you all for taking the time to read my journey, and for trying to help. I feel like I have to specify that the kind words and gestures gave to me are extremely valuable and meaningful. And again, I feel like I have to specify that this post is not meant to curb your interactions with me, only to help you not comment something offensive to myself or others, and to help you see how I/we interpret your words.
I cannot thank you enough for taking the time to read and comment on my posts, and I thank you for letting me in on your lives.
More Info On Crohn’s Disease at www.CCFA.org & CrohnsandColitis.com & crohnsdisease.com
For more information about infertility and the VA, please visit Resolve & VA.Gov
Previous Posts: No Little Lambs & Infertility is a Sadness
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Also Posted on Huffington Post.
I’d like to start this comment by summing it up with the one word that frequently popped into my head as I read my way through it – YES! So much love for this post. I have multiple chronic health issues and people don’t understand that when they don’t know what to say it is sometimes ok just to say exactly that – “I don’t know what to say.” I’ve heard the things you mention in this post over and over and I find the effort sweet, but the words occasionally soul destroying. It’s refreshing to have stumbled across this post – thanks!
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I am happy and sad you can relate. Its hard finding the words, and sometimes people just say what they’re thinking without thinking. Ha. I wish you nothing but positivity and hope. I wish you well, thank you for reading and sharing!
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There are always going to be people who ‘don’t get it’ I guess, but I kind of live for the moments where I find people that completely get it, moments of YES such as those which occurred several times while reading this post. Refreshing.
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I get it, it’s better to live send find the humor than dwell on it, something I am guilty of. Best wishes!!!!!
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Haha I’m not innocent either! There are moments when I completely fall apart because someone made a comment like any of the ones you discussed in your post. Anyway… Best wishes to you too!
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i am new to this blogging thing and i found your page and i havent been able to leave the computer i too am 28 yr old female i was diagnosed with Crohns Disease in 2002 so crazy when i say it out loud but its been 15 years thank god i have only had to have one surgery back in 2005 , probably only becasue for some years i just refused to go to the doctor who wants to hear hey i think its ti,e for another scope or another surgery. Fianlly after 15 years guess what i am still just as sick if not sicker i even with being on treatment doing iflectra infusions now tried humira still on the prednisone my severe Crohns Disease feels like it will never get better i suffer from everythimg i have read about your symptoms. Bathroom issues when you wake up next to your boyfriend whos still asleep after realizing your body never woek you up to go to the bathroom realizing you never had a chance to get up out of the bed . then wonderng how can i pull some magic trick to change the sheets without waking him up or noticing. anyways enough of my babbling i just wanted to say crazy and may be hard to bieleve but i know how you feel even at 15 yrs later after being diagnosed. The struggle is real everyday for people like us . now try to convince the governent you have no money cant work and struggle getting by in your own head your own body everyday let alone doing it with no income no means to support myself and no way to pay for my infusions anymore .