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Chronic Snarkopolist: Chronic Illness and Identity: Who Am I Today?

Post Published: 26 January 2011
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Category: chronic autoimmune conditions column, Chronic Snarkopolist, Column
This post currently has 16 responses. Leave a comment

Hello my loves!

I heard a woman talking about her chronic illness and she said, “Lupus has stolen my identity.”  From that I understood that she lost much of her selfhood to chronic illness.  She cannot work a full week of work but has to work part time.  She can no longer sustain the athletic lifestyle she used to engage in.  And I have begun to think a great deal about illness and identity.

We are many shifting complex and intersecting identities our entire lives.  If you are a mother and you work full time and you are a wife and you attend any volunteer activities or hobbies or functions you must shift “who” you are to fit all of those roles at any given time.  That is why there is such a conflict when someone gets stick and we must take a day off work to deal with a sick child because the “mother identity” trumps the “worker” identity.  Or when we get sick our illness calls out and says, “PAY ATTENTION NOW” and we must begin to listen more attentively to our bodies instead of to the other things in our lives we were doing.

Things take a back seat.  I used to send out greeting cards and many written notes and gifts.  Now, I send far fewer.  I make fewer calls.  My finances are tight so I can afford much less extravagant gifts. Hand making things takes so much of my time and energy even “thought that counts” gifts are much smaller.

A friend who is a healthy young physician recently broke his leg.  For the first time in his life he is navigating both opiate drugs, pain, and being off work for a short time.  He is frustrated because he cannot think as clearly as he wants.  His body is reacting to pain meds the way all bodies do.  And he WANTS to “go walk 20 miles” the way we all do.  Our bodies were designed to MOVE and exercise and enjoy life.

He said he is “learning on a visceral level how it feels to be a patient stuck with a body that’s” not working and pain drugs that “dampen the brain.”  He’s getting it.  No one WANTS to have a body that doesn’t work.  I love my friend.  I would never want such an injury for anyone.  And yet he knows his leg will heal.  He knows he’ll soon be back working with people and even the financial blow to being off work and the physical blow will be recovered.  He will never truly understand the psychology of chronic illness. Yet he has a closer understanding than most doctors.

I explained to him for some of us, it is not about “mastering it” but rolling with it. And, sadly, I feel that some people truly succumb to being ill so much they truly embrace being ill and forget they can heal.  And when I say heal, I don’t mean “get well.”  For some people there is no “cure” for their illness.  For some, healing is going to be living in love and learning to navigate and support and love.  For others, there will be curing and moving forward and remission.  For others, there is a mix.

One life long diabetic, upon changing his diet, eating gluten free, and engaging in a new exercise regime began to notice he didn’t need one of his two insulin injections every morning.  He’d wake up and check his blood glucose and say, “Wow, I’m under 100.” (which is a normal reading, something he was not used to ).  He began to panic.  He confessed he didn’t know who he was anymore without having high blood sugar and as the diabetes was healing.  He might always have diabetes but with it “controlled” he was going to have to learn new identities and new ways of engaging life.

I understood. Sometimes I stop and realizing that without collections calls and the fear of losing my insurance or the fear of going out of remission I don’t know who I am. For me, the FEAR of my health failing is more imminent than my bad health ever is.  I can handle the emergencies because they are urgent and in my face.  I can handle the diagnoses and the medications and the necessary methods of taking care of myself.

But as I continue to heal, some physically, and sometimes emotionally, I get distance on being “the sick girl.”  I am learning to have identities like a knitter, and a music lover, and someone who loves hockey.  I love chai tea, comedy, improv, and f-bombs.  All of these identities move me away from someone keeping a close eye on my health. Yet, like my diabetic friend, I’m constantly aware of my healing and I have an underlying sense of impermanence about my health and healing. “How long will I feel OK?” I wonder. “How long will this sense of well being last?” I ask myself. “How long will my credit be damaged as a result of this? Will I ever be able to go back to my old life?”

I don’t think my identity is stolen. I do think it has altered.  We are infinitely capable of changing and dealing with new ideas. Yet, one friend once told me, “Change is hard and it chafes and it hurts. Dealing with change is unpleasant.” So yes, it does feel like a stolen identity or a death when we become ill because our identities have to shift and wrap around a new concept of ourselves. We have to learn to do new things and we have to learn to perceive ourselves in new ways.  Unlike my friend, some of us see no countdown of days when our bodies will be mended. And understanding the permanence of our situation, we must carryon and live and heal and be who we are.

And that takes massive courage. It really does. I promise it does.

I would love to hear what you have to say about this.  Not a single soul here has gone through this without dealing with identity, health, and loss and change.  I want to know how you feel about learning and re-learning who you are and seeing yourself in new ways and dealing with the idea that sometimes you are not going to be “your old self” anymore.  Is that a stolen identity? Do you fear healing or am I nuts? Tell me! I must know!

I’ll be back same time next week! Kiss kiss!

Melissa –

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16 Responses to “Chronic Snarkopolist: Chronic Illness and Identity: Who Am I Today?”

  1. I never really thought about the fears associated with getting well. I suppose it would be true much like Ted Williams probably wished for fame and fortune, a life off the streets. Now that he has been gifted with opportunity, he is running scared. I believe it would be like that if we suddenly had a cure for our chronic illnesses. Mine is daily migraines. It would be similar to adjusting to a new culture. It would be different at first, but then I think I would fly with it. Everything is navigation in our lives. This would simply be yet another challenge, albeit a positive one.

    • Melissa Travis says:

      Andrea – you are SO SO RIGHT. We would fly with it once given the chance. How lovely go out and be HEALTHY. And not have pain or hurt. How LOVELY to have a body and mind that WORKED TOGETHER the way many people enjoy. How lovely to wake up every day with no pain or fatigue.

      I forget sometimes how much many people take for granted and how much I have forgotten to even long for.

      Thank you for reminding me!
      xo
      Melissa

  2. Kathleen Wells says:

    You always have the words that truly paint a picture of what you and chronically ill people experience. Just recently that unusual test result I mentioned was a negative ANA. I’ve been positive for 26 years. At first I thought, if its not lupus than what has it been all these years along with hereditary hemochromatosis. Maybe I’m not a lupie Ayah at all. It was like my identity as a lupus patient partially defined who I was.

    After wrapping my mind around it and making an appointment at the University hospital, I feel that anything is possible, even a 26 year lupus patient having a negative ANA. It’s something to embrace and be thankful for.

    Back when I was first diagnosed, the first abnomal, Hashimotos, I cried but moved on. When I lost the ability to care for my horses I cried for 2 weeks straight. That is my main identity, riding and training horses, but I moved on.

    Years of chronic illness has brought me to a place where I dwell in the present. No looking back, no looking forward, just focus on the moment and what beauty surrounds me in this moment.

    • Melissa Travis says:

      Yes! Being in the present and focusing on beauty in the moment- that is a BIG DEAL! It is hard to remember that when we’ve lived so much on what we’ve been TOLD about ourselves. You are not the first one to have a change in bloodwork or have a life long change in treatment plans.

      And yet– RIGHT NOW is what matters. I’m so happy for you – and still – I’M SO THRILLED that you’ve learned and can teach everyone else about RIGHT NOW.

      Difficult lessons, but important ones.

      Thanks for reminding me and sharing with me.
      xoxo
      Melissa

  3. Denise says:

    I do feel that my identity has been stolen. Before Hashimotos destroyed my thyroid I was a busy person and took part in everything going on and had a great social life. Now I can no longer even play badminton once a week and find myself making excuses not to go places as I fear becoming so tired that I nod off and prefer to be at home where I can nod off on the couch. All that occupies my mind every day is my thyroid and it’s all that interests me too. I spend hours trawling the net for answers as to why me and how I can get my old self back. It’s ridiculous that I have let it become who I am but I am so scared that I will be ill like I was last year that I can’t stop the obsession that I now have with it. Perhaps once I get near to optimal levels for me I will be able to let it go and not let it define who I am. Hopefully my acceptance will come soon and I can live life for the moment again without worrying about the past and future.
    Thank you for, as ever your wise words.

    • Melissa Travis says:

      Dense – SO TRUE. It does feel like a theft. IT DOES. IT DOES!!!!!

      And yes- there is a balance between seeking information, surrendering and feeling like we’re giving up, and just releasing our bodies to what we have IN THE MOMENT without “giving up” and knowing we can ALWAYS HEAL MORE.

      I’m not sure what the “right answers” are… I know that everyone holds a piece of the key- and that is why we are all in it together- sharing and healing and loving each other. That’s what this is all about. But YES YES YES to feeling lost and frustrated. YES. It is hard not to let a stupid diagnosis and how we feel for the day define who we are.

      THANK YOU for sharing this.
      xoxo
      Melissa

    • Melissa Travis says:

      Denise. oops sorry to misspell your name without a way to EDIT IT. I feel like a FOOL You can call me MelDork. I don’t mind. xoxo

      • Denise says:

        Ha ha hadn’t even noticed until you pointed it out! I very very often mistype my name as Densie so no worries as they say here in Australia. Den is my preferred name for just this reason! Dx

  4. The Carcinista says:

    It’s taken nearly five years, but I have managed to assimilate my “ovarian-cancer-patient” self into my real life in a way that complements but doesn’t erase who I really am. By listening to my body and resting when it needs to rest, I’ve found a way to be as close to my old self (stay-at-home-mom to two young boys, dog-walker, errand-runner, dinner-maker, friend, wife, etc.) as I can while still accommodating the vagaries of Stage IV disease, treatments, appointments, et al.

    There has CERTAINLY been a long learning curve to reaching acceptance, though, and bad news on scans or tests throws curve balls at the family, but with support and good communication we readjust and march on. What choice do we have?

    Thanks for a thoughtful and honest post.

    Sarah

    • Melissa Travis says:

      Hello Sarah,

      Wonderful insight, and thank you so so much for a lovely honest comment! Assimilation and becoming — very profound words!!! And we do have some choices along the way- and I don’t know about you – but I scale the whole gamut – I cry, I rise up and succeed, I flail, I share and heal… and sometimes I feel GREAT about it. And somedays I feel like throwing in the towel.

      THANK YOU for sharing your wisdom!
      xo
      Melissa

  5. Kathy says:

    I’m still navigating the obstacles that my relatively recent cancer diagnosis thrust up in front of me. I am learning that while my disease may have stolen who I WAS, it is forcing me to figure out who I will BECOME. I am still in chemo and feel oddly secure here. As long as I am actively fighting and treating and under the close eye of my medical team, I feel safe and cozy. My oncologist mentioned that I might be able to go to 3 month checkups soon and I panicked. What will I do all on my own?!?!?

    I have a few months to adjust to that idea. I know I will be able to settle into that routine as well. I have learned to roll with each day as it is presented. Planning for an activity next month leads to disappointment, so I keep it very loose. And that works. Besides, like mentioned above, what choice do we have?

    • Melissa Travis says:

      Kathy- OH MY-

      “may have stolen who I WAS, it is forcing me to figure out who I will BECOME” — POWERFUL words. Powerful!! And yes! I get that panic! I get it! I totally understand the feeling of wondering what to do when we’re on our own! Wait – NO – don’t make ME do this on my own! YES!

      xo
      Melissa

  6. Joan says:

    Interesting thought, your chronic disease changing your perception of self. I know having hypothyroidism changed what I am able to do, and has created some medical experiences I probably wouldn’t otherwise have had.
    Mostly, I think it has affected how others see me. This is because since being diagnosed, I’ve gained about 150 lbs. Now I gained some lbs. before diagnosis, because I was starvingly hungry, and therefore ate more than I should. However, once diagnosed, I no longer had excruciating hunger pangs and ate normally. What did me in was whenever I was horribly fatigued because of being under dosed, or having an illness, or allergies, or whatever. Either eating normally, or less, I gained weight because I was inactive for a while.
    However, people only see the weight, an assume you eat like a pig, and you are lazy. They have no conception of what you deal with every day. When I am feeling better, I go swim for exercise, and after a while I can even lose some weight. Then something always seems to happen that makes me inactive, and I gain everything back, plus some.
    Other than hypo, I’m actually very “healthy.” My cholesterol is great. I never have high glucose levels. All my other tests come back fine. But i see in other’s eyes, esp. doctors, that they are think I am about to become diabetic, or my cholesterol must be sky high, when I’m probably better than they are. But once you are overweight, you are plopped into a box with every other overweight person, and everyone there is viewed in a stereotypical way, one that is degrading. Add in age, and few will give you the time of day.
    So now I’m still the same person as before, but I have to add in combating stereotyping. And it’s harder to inform others about thyroid conditions because the tendency is to automatically turn off listening when that someone is overweight, as they are assuming you are just making an excuse.
    Thank goodness I have a supportive husband and others. They still see you as you.

    • Melissa Travis says:

      Joan- YES – weight is often used as a boogyman. And many in the medical field do not look past weight to see what is an underlying cause. OFTEN when they cannot figure out WHY/WHY things are going wrong with our bodies they simply blame the patients.

      Or – for example, they are giving us drugs that cause weight gain – and even then, they tell patients to lose weight. REALLY- I’ve had similar issues!

      When you go in with a back injury they will shoot you up with steroids. Then, when you gain weight from it they will tell you that your weight is causing the pain. But you originally went in normal weight with the injury. IT MAKES NO SENSE. It was a fabrication of the physician to blame YOU the patient for gaining weight because they cannot offer any better reason for the pain. That makes US have to seek out pain resources that do not involve steroids or drugs- it causes US to have to deal with pain and suffering. And the BLAME is insufferable. YES. IT IS.

      I’m feeling ya. Vibing ya.

      If you go in with an ear infection – they tell you to lose weight- when a ear infection has NOTHING TO DO with weight. Just deal with the infection. We can discuss weight separately… and more – let’s discuss the underlying causes. Most doctors blame the patient for over eating. And most surgeons are over eager to cut cut cut and do bariatric surgery. If such an extreme is really necessary for so many – CLEARLY bodies are not functioning. There are multiple issues not working right.

      I’m soap boxing.

      I’m feeling ya.

      I’m worked up.

      Rawerrrr.
      xoxo
      Melissa

      • Joan says:

        Nice to know you understand. I’m sure many people reading do. I have felt much worse than right now, and I was 150 lbs. lighter. And when I was even thinner, and had pains or hypo symptoms, you can bet drs and others blamed it on my weight. It makes NO SENSE at all. So I KNOW weight has NO BEARING on your general well-being.

        That’s one of my gripes. Today, the medical systems wants to call obesity a disease. It is NOT a disease. It is a symptom. It does not CAUSE anything. It is a RESULT of disease or poor health habits. Mostly, others say “poor health habits” (overeating), but totally dismiss any health related obesity (my sister also had weight gain from a medicine she was given). It makes it easy for people to just say “don’t eat so much!” And so doctors must feel that they can just dismiss any complaints from overweight patients until they lose weight, and the general public can feel superior to overweight people until they “get their act together” and lose weight.

        So how can we easily express our new selves when others are simply boxing us all up together as sub-important people in society? It takes a lot of extra effort to do so, at a time when many of us don’t have a normal amount of energy, much less any extra.

  7. sara says:

    it is interesting. when i see symptoms i ask myself who is within this body of me who is creating these symptoms. i want to go inside and stop it.

    i saw some comments. good on you maybe! you can move on!

    i work very hard i love my work i m totally independent .. they day i can’t do these i prefer no other personality. even now .. i don’t think tolerating pain worth it. i understand you people want a purpose for life in spite of chronic illness and this is totally understandable. but not for me.

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