When you’re getting to know someone for the first time, there are certain things about yourself that you want them to know. You may not even realize that you’re doing it, but there are certain key pieces of information that whether consciously or subconsciously, you need them to know. Maybe it’s your profession, or where you’re from, or the names of your children. Maybe it’s that you’re a dancer or a world traveler. No matter what these things are, they are things that if someone didn’t know about you, they wouldn’t fully understand what makes you, you. They’re the essence of who you are. There are things that you do, that you believe, that you embody, that make you who you are. So, what happens when you’re sick? When your diagnosis becomes a very integral part of your reality? When you can no longer do all of the things that made you who you are? Does your identity change? Do you feel differently about yourself? Do others see you differently? Your condition may not be something you’d tell someone about at a party, but it’s still a part of who you are, and only you can decide how it will or will not define you. In this week’s Health Activist Chat, we discussed the crossover between identity and diagnosis.
The Positive Power of Diagnosis
For some, diagnosis can lead to very positive changes in sense of self and identity. For those that have been searching for a diagnosis, for a name to call what they feel and for a justification for their symptoms, a diagnosis can be liberating. Finally – friends, family and doctors will see that you’re not making it up, that there is a name for what your body is doing and there is something that you can do about it.
serenebutterfly Before the diagnosis I thought myself as being weird or weak, after I realise it’s because I have a neurological condition #hachat
CIRants Getting a diagnosis was a relief – I had a course of action after 11 years of not knowing what was wrong. #HAchat
TomKindlon: Before the diagnosis I was full of doubts about myself: wondering was I doing something wrong in my lifestyle.#HAchat
MakeThisLookAwe I’m 2 completely different people before/after my condition. I can’t be her anymore. Her activities hurt. She is not me. #HAchat
marandacarvell @wegohealth it’s been good for my emotional health in many ways. i know i have A, B, C and not just tired/crazy/whatever #hachat
serenebutterfly I found my diagnosis bittersweet – upset as there’s nothing they can do to fix me but relieved that there was a name to it #hachat
TiffanyAndLupus Post-diagnosis me now feels very empowered by my life choices after diagnosis. By owning & admitting it I feel much happier. #HaChat
Diagnosis gives you the power to spring into action. It means that there is something that you can start doing to hopefully make yourself feel better. KatharineS84 : Having an answer to why I was sick all the time was a relief. Initially I felt more in control. #HAchat There are new doctors to see, new treatments to try, new research you can do. Where you might have felt lost, you now have some direction. No matter what the outcome, you can at least start to make some changes to your life.
CIRants Diagnosis sets expectations – higher or lower, they are what they are, and it provides a chance to accept them. #HAchat .
marandacarvell it’s a lot easier to have a plan of action, even if i don’t always love the plan 😉 #hachat
Self-Image and Perceived Identity
KatharineS84: Having a diagnosis has pros & cons. It gives you some power, some options, but it also opens up other scary doors. #HAchat
Diagnosis can also lead to a serious identity crisis. Your diagnosis will likely mean a monumental shift in lifestyle, in everything from your job to the medications you take, the way you spend your free time, your exercise habits, the way you have fun, your relationships with friends and family and your potential for relationships in the future. These are scary things to face, which is why depression is such a common comorbidity across conditions. @TiffanyAndLupus: For many, illness is destroyer of all they loved. For some denial is better than accepting reality #HaChat. You may have to give up some activities that you loved, or friendships that you can no longer maintain. You may have to give up some things which your identity and your happiness previously depended on.
This sense of loss can be exacerbated by the way that others see you and your new diagnosis (or lack thereof). It is for this reason that many choose not to disclose their condition in the work place, or that you may have stopped discussing your journey to diagnosis. You don’t want people to see you as “sick,” as a faker, or as an exaggerator. There’s more to you than your symptoms or your diagnosis, and if people find out they might make assumptions about you based on what little they know about your condition. They may blame you for your illness, saying that you deserve what you got based on assumptions on your behavior.
Dyverse_Steele sometimes the stigma of disease can even affect your own thinking maybe it is in my head a little bit #hachat
KatharineS84: I struggled w/ppl finding out I had CF before they got to know ME. Didn’t want them to only see me as “sick.”#HAchat
What’s your label?
PurdueMocha: My friends see me as a “dia-bad-ass” #HAchat
In your journey to redefine yourself, you’ll need a new label. It doesn’t have to be something that you tell everyone, shout from the rooftops or tattoo on your body (though we have seen some pretty awesome spoonie tattoos), you have to pick a title or a label that works for you. The decision is yours and yours alone. julianna12369 We choose the label we want to carry, we walk the life we want to walk. Our limits are our own. We make our rules. #HAchat
TiffanyAndLupus : In the lupus community, I like to think of us as “Lupus Warriors”, we often call each other “lupies”. 🙂#HaChat -3:24 PM May 29th, 2012
KatharineS84 : We refer to each other and cysters (females) and fibros (males). It does make it feel like more of a “club” than an illness. #HAchat
julianna12369 It’s an umbrella of all chronic illness. You got it, it’s chronic? Then it’s awesome to us! #chronicallyawesome
What’s the benefit of picking one of these nicknames/titles/labels to accompany your new sense of self? It comes with a whole community of support. It connects you to others living with your condition, but it also gives you a way to connect with others across conditions. marandacarvell terms like #spoonie help ppl connect and create an instant community of ppl who ‘get’ you
MakeThisLookAwe For all invisible diseases, pre- and post-diagnosis, But You Don’t Look Sick’s #spoonie!!! #bydls #HAchat-3:25 PM May 29th, 2012
marandacarvell love @whatthejules #chronicallyawesome hashtag for uniting others who lift me up, don’t bring me down, yet still get me #hachat
MakeThisLookAwe My disease is rare (less than 400 cases), so I call us #medicalunicorns #HAchat
You may not have control over your diagnosis or your condition, but you do have control over how you handle it. Sometimes things happen for a reason, but sometimes things just happen. Without rhyme or reason, this is the hand you’ve been dealt. Now it’s time to learn how to play it.
mandylipka: Take it one day at a time. Your dx doesn’t define you, you define your dx. And as always, be your own advocate!#HAchat
TomKindlon: (Tips for “new” patients) “Things work out best for those who make the best out of how things work out”#HAchat
MakeThisLookAwe Sometimes, things won’t work out for the best. But we can #MakeThisLookAwesome, even if it is only to defy slowly dying! #HAchat
TiffanyAndLupus: Just because we have to adjust our lifestyles post-diagnosis does not mean we can’t still enjoy it. Find your NEW happy! #HaChat
How do members of your community identify themselves? Do you have a nickname for members of your community or your condition? If so, we’d love to hear it! Email us at firstname.lastname@example.org or interact with us on Facebook or Twitter. And as always be sure to join us next week for a special #HAChat to kickoff June’s Health Technology Month!