Facing Reality of Chronic Illness and Disability

Are you ill with some chronic condition but refuse to acknowledge it? Do you attempt to maintain all semblance of normalcy despite the obvious physical and emotional toll the chronic illness takes on you and your marriage? If it’s not you personally, do you know someone who fits this description? I do.

I recently spent some time at the home of my friend Amy. Amy is a married mother of two teenagers who works part-time from home and has Multiple Sclerosis (MS). Amy was first diagnosed with MS in her early 30’s and uses a cane to help her get around. She confided in me recently that she can’t bring herself to tell others she has MS. When people ask her why she walks with a cane, she tells them she hurt her back. It’s less stigmatizing according to Amy and doesn’t draw as many looks of pity. Amy tells me she refuses to give in to her MS and is always looking for a cure either with conventional medicine or new holistic approaches.

I truly admire Amy’s tenacity and desire to live as normal of a life as possible, but I also suspect something deeper is going on with her: Denial. Denial is a powerful defense mechanism that helps us ward off feelings of despair and depression. The problem with denial, however, is that it creates problems with relating and being genuine with the people we care about the most.

Amy’s denial has ripple effects throughout her marriage and relationship with her kids. Her husband and kids understand that it is not OK to talk about mom’s MS with anyone and that they are to downplay her limitations as much as possible. This is difficult because Amy requires a lot of help in her activities of daily living and yet, no one is allowed to talk about ways of doing things differently to accommodate her illness. Ironically, Amy believes she is doing her family a favor by downplaying her MS when in reality, the denial makes it much harder for them.

Denial results in a ton of resentment. Amy’s husband is resentful that he can’t have an honest and productive conversation with his wife about her MS without her getting defensive and angry. The kids find mom a lot of work when it comes to going places and getting things done because she won’t use a scooter or power-chair to make life easier for herself. Plans are put on hold, issues skirted and feelings avoided. Anger and frustration build up over time.

Perhaps the one who suffers the most however is Amy. There is an edge to her, as if she could blow at any minute. She works hard to keep it together but then again, we always feel like we’re wearing a mask when we choose denial over reality. Her anger seeps out when she least expects it and her husband and kids are the usual targets. Viewing life through rose-colored glasses at the expense of reality comes at a high price.

One of these days, I’m going to sit Amy down and share with her the things I’ve learned myself through this familiar path of denial. Many of us with chronic illness have walked it and come to the realization that it brings neither joy nor intimacy to our marriages and family relationships. As the saying goes, honesty is always the best policy, even if it initially brings discomfort and fear.

I would tell Amy:

  • It’s always better to face reality no matter how difficult and painful. When you face reality, you face the truth. The truth does not take away hope. Hope for a cure or hope that your condition improves can absolutely coexist with reality. Reality is getting real with yourself and your spouse about what is happening to you today, in the here and now, and how you can make changes or accommodations that will best serve the interests of your marriage and family.
  • · Your spouse and family can handle sadness better than anger. Overcoming denial and facing reality takes a lot of courage. Some days you will feel prepared for it and other days, sadness will overtake you and leave you feeling defeated. Grieving your losses is essential and there are always losses associated with illness. Denial, on the other hand, produces anger and anxiety at not being able to control the illness or the perception of it. In the long run, sadness over your new reality is healthier than being angry and in denial.
  • The sadness and grief will subside replaced by a strength you never knew you had. As in all grieving, the feelings of sadness and loss lessen over time. It doesn’t mean that these feelings go away entirely or that they won’t resurface from time to time just as they do when we lose a dear family member. What it does mean is that after a period of mourning, you will discover new joys and strengths that you didn’t even know you had. The energy you once expended on denial is now free to flow into more positive areas of your life. You will surprise yourself with newfound resiliency and plans for the future.
  • Illness does not represent inferiority, weakness or pity. Illness is a health deficit, not a character flaw. Illness can happen to anyone at anytime. If people don’t understand your specific illness, educate them and allow them to see your strength and confidence. Refuse to see yourself as less than a conqueror. Teach others by example that people can still lead happy and productive lives in spite of being sick.
  • You define normal. You set the tone for your life. People will pick up on your honesty, vulnerability and transparency and be attracted to you because of these qualities. Try to integrate your illness into every day conversation and life. It’s not something to be ashamed or embarrassed about. If you worry about what others think of you, you become a slave to their perceptions, comments and standards.
  • There is something only you can accomplish in this world. Although chronic illness does alter our lives in sometimes significant ways, it doesn’t mean your dreams and plans have to die. You can still accomplish your goals even if they have to be tweaked somewhat or done in a different manner.  Having something to work towards gives life purpose, meaning and passion.

© Copyright 2011 by Helena Madsen, MA, therapist in Gilberts, Illinois. All Rights Reserved. Permission to publish granted to GoodTherapy.org.

The preceding article was solely written by the author named above. Any views and opinions expressed are not necessarily shared by GoodTherapy.org. Questions or concerns about the preceding article can be directed to the author or posted as a comment below.

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  • Vickie

    Vickie

    May 31st, 2011 at 3:25 PM

    It must be terribly difficult to deal with something so debilitating at such a young age. You feel like you are in the prime of your life and inexplicably it is taken away from you. I would think that denial would be a huge obstacle that anyone would have to deal with when being given news like this.

  • JUAN

    JUAN

    May 31st, 2011 at 11:55 PM

    I have known a couple of people who hide their chronic illness.And they do it because they do not want to be treated differently or be discriminated or made fun of.But I think they are doing more harm to themselves than good by hiding such things.

    At the end of the day you know you have the illness and I’m sure it is would be very depressing if you can’t even share your feelings with people around you.

  • E.Franks

    E.Franks

    June 1st, 2011 at 3:37 AM

    The way I see it Amy is more concerned bout what others would think of her than she being comfortable with herself.This is not a good thing coz if we try to do things to satisfy others while depriving ourselves we’re not gonna get too far!

  • Julia S

    Julia S

    June 2nd, 2011 at 2:45 PM

    We say people with a chronic illness hide it or pretend it doesn’t exist and go on to say how it is harmful to them and how it is important to be open about yourself and know yourself and everything.

    But spare a thought for those people-what actually made them uncomfortable with their status of having illness?maybe they were ridiculed or discriminated against! Maybe that is what made them start hiding their illness. And to go through such an ordeal after actually knowing that you have a chronic illness can be mind tearing!

  • Kaye Paxton

    Kaye Paxton

    June 3rd, 2011 at 9:01 PM

    Refusing to acknowledge that you’re stuck like that until science gets around to curing your chronic condition is pointless imho. But then life doesn’t always make sense or is fair.

    You can ignore it all you want but doing so changes nothing. It’s better to do the best you can and stay as positive as you can. I believe positivity is very healing and accelerates the effects of any treatments, whether it is a medicinal or psychological regime.

    Your friend also sounds as if she’s depressed and needs to get help with that too.

  • Geraldine Newman

    Geraldine Newman

    June 4th, 2011 at 12:38 PM

    Why not send your friend the link to this article, Helena? That would give her time to digest what you want to say in private and time to think about it and any response she wanted to make, even if it’s none at all.

    I hope she would see it as a good friend reaching out to her in a loving and truthful manner. Our most treasured friends stab us in the front, you know.

    I once heard that and it’s a perfect description of my best friends-they tell it like it is even if they don’t think I want to hear it because they care as deeply about me as I do them.

  • T.C. Drake

    T.C. Drake

    June 4th, 2011 at 1:18 PM

    You always get ones who think that their illness is their fault somehow even though it’s near impossible to deliberately get yourself sick.

    I don’t understand why they think like that at all. Even if something could have been prevented, things happen.

  • L.O.O’Donnell

    L.O.O’Donnell

    June 4th, 2011 at 2:00 PM

    I don’t think it’s in good taste to bring your illness into everyday conversations, because most don’t want to hear about it.

    I’m going to speak for everyone when I say this: if some person asks how you’re doing and managing your illness, they want the answer over within two minutes and never spoken of again in that same conversation. They’re just being polite.

  • nikki wilson

    nikki wilson

    June 5th, 2011 at 2:57 PM

    @L.O.O’Donnell : “I’m going to speak for everyone when I say this…” I beg your pardon? I can tell you right now that you’re not speaking for me!

    If I ask I genuinely want to know. You obviously don’t have a compassionate bone in your body.

    Don’t be surprised when you’re sitting in that nursing home with no visitors when you get old, okay? Just giving you a headsup.

  • Chandler G.

    Chandler G.

    June 5th, 2011 at 3:14 PM

    Ignoring your condition and not accepting it will never make it go away. It’s like denying that your house is on fire, turning your back on it and expecting the flames to put themselves out. They won’t, and will burn your house down while you keep denying their existence.

    I hate the word ‘normal’. It’s a completely arbitrary term made up by men and women who want to have a sense of elitism about themselves when they really have nothing at all to be proud of that makes them any better than the next person.

  • David J.D.

    David J.D.

    June 6th, 2011 at 10:02 PM

    I hate it when my friend constantly gripes about it when he’s sick. I know he’s sick, I can see he’s sick, but I really don’t want to hear him complain about it when it’s not going to kill him! Whining doesn’t help his ME.

  • Thad K. Wilcox

    Thad K. Wilcox

    June 9th, 2011 at 12:51 AM

    @David J.D. –Gee, how selfless of you-not! Did it ever occur to you that he and others like him may need to talk, to get out all their worries and concerns and stop themselves from going crazy by regurgitating it all inside their minds 24/7?

    Some friend you are. Their “whining” as you put it can be very cathartic. At least have the decency to look concerned even if you don’t feel it, please.

    I hope you’re never burdened with a chronic illness as I wouldn’t wish that on my worst enemy but if you are? That’s karma, mate.

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