"Suffering the Slings and Arrows of Outrageous Fortune"

As I have mentioned, I am writing a book about living with chronic illness and I would love to get input from you…I apologize in advance for ‘thinking out loud’ in my posts about it.

Today, I am thinking about getting a diagnosis and what feelings that experience brings up. I think there can be any number of emotions that one goes through when being diagnosed (or when a close loved one is): Fear, Anger, Guilt, Grief to name a few.

For me, it was primarily grief. I felt overwhelming sadness about what was lost, about how my daughter’s future was being rewritten from what I thought it should be, for the suffering that she was experiencing. I wrote about my grief and sadness ad nauseam for months, until even I got tired of listening to myself. Sometime after the first anniversary of Em’s diagnosis, my grief  became more manageable. Don’t get me wrong, it is still there, it just rears its ugly head less often. Also, there is truth to the adage that humans can adjust to almost anything and it is harder to grieve when you are accustomed to whatever that challenge is.

I also felt a lot of fear, which is a no-brainer as far as I am concerned – but not much anger, I think because my emotions were channeled into grief instead. I subscribe to the theory that all anger comes from sadness. So, I think I just mostly skipped the anger portion of the program and went straight to sadness. That isn’t to say that I haven’t felt anger at times – it usually is just very targeted anger over a very specific event or towards a specific person. Most often a doctor who has treated my kid poorly.

And I have felt guilty over not getting Em diagnosed sooner, for labeling her a drama queen as a child, for allowing myself to be diverted by doctors poo-pooing my concerns when I knew darn well something was wrong. And, no amount of logic can really alleviate that guilt.

What emotions were stirred up when you (or your loved one) got a diagnosis? Which one was the most difficult to deal with? If you have thoughts that you would like to share on this topic, please feel free to comment here or on my Facebook page.

(If you comment, be aware that I possibly may incorporate your comment or a portion of your comment or the general jist of your comment into my book.  I will try to contact you if I do, but I cannot promise to be able to do so – consider this your notice. I appreciate your help.)


Comments on: "Thoughts on Diagnosis and Emotions" (11)

  1. My overwhelming feeling on diagnosis of all my illnesses (H-EDS, M.E., Congenital Spinal Stenosis, Dermographism) was relief. I’d been ill and in pain for months, and in the case of both the spinal stenosis and EDS years, and much of the time told many of my symptoms were psychological as test after test came back normal. To finally realise my ill health had been validated and that I was genuinely physically ill gave me hope that something could finally be done to ‘fix’ me.

    The depression, fear and sheer hopelessness came afterwards: when spinal surgery didn’t relieve my back pain; when I realised there were no ‘cures’ for the ME or EDS and my life would be forever lived with pain, exhaustion and illness; and when the dermographism turned out to be a pointer to mast cell disease.

    • Oh, excellent point. Relief is a very real thing. Honestly, when we finally got to Dr.Tinkle after waiting for months, I was more terrified of NOT getting the expected diagnosis than of the diagnosis itself. I was terrified of not being right, of not being validated, of being ignored, and being cut loose with no help whatsoever. It was a huge relief to be listened to and helped. You are also right about the negatives setting in afterwards, when you realize it is not going away.

      Thanks for sharing!

  2. Shari Ethridge said:

    I was mostly frtustrated and angry. It took me seven years to get a diagnosis. I saw dozens of doctors along the way. Many were rude, condescending and really did not want to take the time to figure out what was wrong. I feel as if I have some sort of PTSD from all that I endured. In the end, I was the one who figured it out. I was the one who made the appointment with Dr. Tinkle. He diagnosed me with HEDS. Two of my three young adult children also have EDS. Good luck with your book!

    • It is hard not to be angry when doctors should have figured out what was going on. When that stretches out for years, well, of course you are angry about it! And the horrible stuff that doctors put us through – criminal at times! If I had a magic wand, I would ‘help’ them understand by ‘gifting’ them with EDS (or any of the crap that comes along with it) for a few days. It would change their tune mighty quick, for sure. (I probably have more anger simmering than maybe I admit to myself – or maybe it was just drowned out by the grief I felt.)

      Thanks for sharing!

  3. You’re welcome 🙂 And thank *you* for pointing me in the direction of the Inspire EDS group. I am now waiting for an appointment with an immunologist who I hope (!) has some knowledge of mast cell disease. Like you I’m more terrified of NOT getting a diagnosis than of getting one, because if I don’t have mast cell issues I have no idea what all my drug and food reactions are all about! xx

  4. Ainsley said:

    For me, the experience was similar to what Bertieandme experienced. Relief. I was diagnosed with classic EDS by Dr Francomano and I actually walked out of the appointment with some hope that some of my symptoms could be relieved with the correct treatment. About 2 months in, I started to realize that while creams and physical therapy may help in small ways, there was nothing that would change the underlying condition. As I get further away from my initial diagnosis (about a year and a half ago), the frustration and anger continue to rise.
    On another note… I STILL have doctors questioning the diagnosis. If Dr Francomano, or Dr Tinkle, says its EDS, It most likely is… Stop telling me to get genetic testing for other conditions. Sorry. Had to vent a little

    • I think a lot of people experience that overwhelming relief when finally receiving a diagnosis, and, unfortunately, they also get that reality check when the relief just isn’t able to counteract the daily grind of living with that diagnosis.

      It is incredibly frustrating to have doctors (who are not experts on EDS) questioning a diagnosis from an expert who really does know EDS. Don’t apologize for venting – I am right with you!

      Thanks for sharing!

  5. Sarah said:

    When I was diagnosed, I was to young to be angry. I must have been round seven years old. I was amused at the situation; I found it funny how excited the doctors where about the fact that I could bend my fingers (which I didn’t find awfully exciting^^). I’ve also always loved slightly disgusting things, which is why I was morbidly impressed by my dramatic looking lacerations as a child (apart from the fact that it hurt and didn’t heal properly, which annoyed me).
    My mum, however, did some research after the diagnosis. And her reaction is one that has not been mentioned above, yet: denial. She never pretended that I wasn’t ill; she also never pretended that I didn’t have EDS (she did try to help me in every way she could think of (the could think of is important here). But – she told herself that 1. I was “only type 2, the mild type” and that 2. the disease was more prominent on the left side of my body and that I was therefore only half-half and that there was nothing major to worry about. Chronic pain and all kinds of every day life problems, she still doesn’t understand. When I was 18, I went to my doctors on my own (because I didn’t accept the “you’re not that ill” speech any longer) and since then, I’ve been trying to cope with EDS in the way that I think serves me best.

    • It is fascinating how humans can deny something that is right in front of them! I am sure denial is a helpful mechanism in some situations, but not so much when you are dealing with a child’s medical condition. As a parent, I can say that on one hand, I don’t understand it at all, but on the other hand, I kind of do understand. Sounds like you are doing well in managing your EDS – so glad you were able to take the reigns and seek out ways to cope!

      I think you make a really good point about age at diagnosis – for someone diagnosed young, it just is. For folks diagnosed later in life, it can be really traumatic. You sort of confirmed my theory that if you are diagnosed young, you don’t really know anything else and it just is part of you. Doesn’t mean it isn’t still painful and difficult to deal with in all kinds of ways, but I have to think that being diagnosed early might be the easiest method, compared to searching for decades for an answer!

      Thanks so much for sharing your perspective – it is really helpful for me because my primary experience is from watching my daughter who has found the whole thing very traumatic! Everyone has their own journey through chronic illness, there is no one set path that is correct.

      Good luck in your journey with EDS!

  6. Sarah said:

    Oh, and one more thing:
    For me, the diagnosis has never played a central role. I have been very lucky to have been diagnosed at such an early age. The way to the diagnosis was also quite direct as my uncle (who studied medecine at the time) recognized the disease and then we only had to look for doctors (none of my family have EDS). I’ve never been mad at the diagnosis -EDS is just the name that people gave my symptoms. I have been mad at doctors and I’m still very suspicious of them as they never know what they’re doing (most of the time. All right^^). To be honest, I don’t really understand the fixation with the diagnosis. I am angry at my life, at my every day life. I am angry that I have to abandon doing things I love because my body is deteriorating. That pisses me off. But I’m not angry as a result of the diagnosis. On the contrary, I am very, very grateful for it. Without it, people would regard me as a freak instead of a freak with a very rare disease that has an actual name. The latter is definitely preferable. The diagnosis gives me the opportunity to do research. And I love research.

    • It is definitely better to have a name for all of these crazy symptoms – the alternative of being told you are just nuts is not acceptable. I know there are some people who avoid a diagnosis, but I would encourage anyone to seek it out, just for being able to manage it better so your quality of life can be better. One needs all the help one can get when dealing with doctors who are so incredibly clueless!

      There are so many feelings that come up – anger is such a part of the process. It can be a bad thing, but it can also propel us to make changes and improve our situation. Of course you are angry and frustrated that there are things that you have lost. EDS is a thief – it steals hopes and dreams. But, there is a point where acceptance comes and you see there are other hopes and dreams. Acceptance is hard won though, and about the time I think we have it mastered, something happens that makes me start all over at the beginning of the grieving process.

      It is hard, but you are not alone, and, as you pointed out, there are good things that can come of difficult situations!

      Thanks so much for commenting and sharing your thoughts!

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