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.
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.
Self-Image and Perceived Identity
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.
What’s your label?
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
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
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.
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 email@example.com 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!