It’s All Relative (Or, I Refuse To Be A Victim’s Victim)

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It’s interesting to me that people who share the same disease that I do think that my life is somehow charmed, that I have more than they do, that I am better off. I would never judge another person’s insides by their outsides or by my own. I would never presume to know what they are experiencing even though we share a rare disease because for all of us with this disease, the journey is difficult, lonely, overwhelming and discouraging. So, to be somehow judged for having it “better” is odd and a little cruel. It’s also ironic because just about everyone I’ve ever talked to with this disease has expressed frustration at one time or another about being judged for not looking sick. Most of us understand that our disease is invisible.

Recently someone who also has sarcoidosis told me how “lucky” I am that I no longer work. She said this very matter of factly, as if it were a no brainer and never once considered how not working actually makes me feel, that there are hardships for me and my family for having made the decision to quit. Clearly I must be “lucky” because I can stay home all day feeling lousy and gasping for air. Clearly I am “lucky” because all the pressure is now on my husband to “take care” of me. Clearly I am lucky because leaving a prosperous career has created a financial stress for us. Clearly I must be “lucky” because long lonely days stretch out ahead of me day after day. Clearly I am “lucky” because I am no longer able to be fully engaged the way I once was in my life. Clearly I must be “lucky” to have lost a career I worked very hard to build. It’s all relative. I would much rather be physically healthy and be at work, doing what I used to do and what I loved. What I do now, is worry, feel guilt and struggle with the idea of going back to work all the time. I struggle to find my purpose and I wonder what value I still have to offer the world.

I would expect this kind of judgement from those who have never suffered the fate of a chronic life changing condition. I would expect them to say something so foolishly ignorant to me because they simply could not understand. I never dreamed someone who also has this hideous disease and who has walked in similar shoes would choose to be so thoughtlessly callous. We all have to make the decisions we believe are best in our own individual situations and there should be no judgement or comparison. I know people who are far sicker than I am who continue to work, some because they want to and others because they have to. I know people who have this disease who are financially wealthy and I know people who have this disease who are poor, some who became that way in part because of this disease. I know people who have remained happily married despite this disease and I know people who have failed to keep their relationships successful after their diagnosis. I know people in remission from this disease and I know people waiting for organ transplants.

Those of us with a chronic condition walk a similar path but each of us has our own independent journey to navigate. Instead of feeling envious of those who have more than me, I try to be grateful for them. Instead of feeling superior to those who have less, I try to better appreciate what I do have. Instead of comparing my disease progression to someone else’s, I try to stay focused on the things I need to do to be as healthy as I can be despite what this disease tries to do to me. I know I have it better than many and worse than some but I also know that’s just life and instead of spending my time comparing my insides to someone else’s outsides, I just try to live as well as I can and to be encouraging to others in similar situations. It’s not for someone else to decide that my life is “charmed”. I know my life is good and it is good because I choose to focus on the good and deal with the bad. I make gratitude a daily practice and I strive to be inspiring and inspired by others who share this difficult voyage.

9 thoughts on “It’s All Relative (Or, I Refuse To Be A Victim’s Victim)

  1. Deborah

    I really feel you’ve taken out of context what this person said. I’m sure they weren’t trying to diminish your pain. there are a lot of people like Aunt Bev for example. she didn’t have a spouse who was prosperous and could work. she had no money for vet bills or medical or to even consider any kind of alternative treatment. she lost her home . last I heard she might even lose her dogs. I think if a person looked at you and the fact you have a loving considerate spouse who can support you even though your life not may not be quite as prosperous as it was. Who wouldn’t feel just a little bit envious and wishing they were in your situation? it’s not about how sick you are or not. it’s that some of us have absolutely no money and no support. I think you’ve missed the gist of this whole column.

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    1. I know the person who said this to me. It wasn’t taken out of context. I didn’t miss the gist of the entire column…I wrote the column…I know exactly what I meant and exactly what I said and why I said it. It does no good to compare. We all live in different situations. The person who said this to me has a loving husband and is actually in remission from this disease. My point is simply that we should not diminish each other…we should support each other…no matter our situation and especially because we all know what this disease is capable of doing to us. There are plenty of people I could point to and say…”I don’t have that…they must have it better than me.” I don’t. Instead I try to focus on myself. I know I can never fully understand another person’s situation so I opt not to judge it. I wasn’t talking about Aunt Bev either…I know her well and I know she has had a terrible time. I also know that despite that, she isn’t the kind of person to diminish someone else because they have more than she does. If anyone missed the gist of what I wrote…it’s you.

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  2. Nava

    Hi there! Good points.

    It’s a well-known human nature trait that some (many?) victims victimize others, whether it’s overtly or not. Sometimes the victimization is out of envy for real or perceived advantages that the victim’s victim has, and sometimes it’s the opposite (because the victim’s victim is actually or presumably weaker). Just as you said. I’m familiar with it (especially with the envy) in aspects of my life. I try not to let it get to me, but I can’t say that I’m very successful – it depends.

    Sarcoidosis Soldier – be well (as well as possible) and keep marching on (as far as possible)!

    🙂 🙂 🙂

    Liked by 3 people

    1. Hi Nava – So good to see you! And you’re right…I shouldn’t let it get to me…Mostly I don’t…but obviously…this time it got under my skin…I decided to write about it because I think it’s really important that those of us with this disease strive to support each other rather than diminish each other.

      Liked by 1 person

  3. I sympathise. It happens to me and when it does I experience similar thoughts and feelings. I make a point now of avoiding people who judge me (and therefore others) harshly. Usually, those who do this have little understanding (and equally little interest) in finding out about what it entails. Establishing a reshaped life-purpose seems to be an important part of stabilizing our health and the waste of capacity and potential is a challenge. Many skilled and knowledgeable citizens are rendered unable to contribute even though they would like to. I think your blog makes a real difference to people and when I’m especially inspired by a post I share it with members of a Sarcoidosis online community in the UK via Facebook. I notice it is well received. I wonder if one day a book or two will evolve from this collection of hard won experience. Keep writing. The more we do, the more we find our voice.

    Liked by 1 person

    1. Hi Lynn – I am so glad to hear that folks in the UK receive my blog well. I think it is so important that we all know we are not alone and that while our experiences differ for personal reasons, we all struggle and I believe we are stronger together. It pains me when that doesn’t happen. I agree with avoiding people who judge too harshly as rarely to they see the problem in it. I hope my blog makes a difference for others. I write it for myself but if my experience can help others feel less alone and even inspired from time to time…that is a very good thing. A book is evolving now…as a matter of fact! Thanks again Lynn!

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  4. yourfriendbettyjk

    I agree with the point you are trying to make — everyone is in a different situation, some are lucky in some ways and unlucky in other ways; it does no good to compare ourselves to one another. What we have in common is the knowledge about how difficult it is living with a chronic illness, regardless of our other circumstances. We should be cheering each other on, such as you do, rather than diminishing someone’s success by implying that they don’t have it as hard.

    Liked by 1 person

    1. You nailed it Betty…I love this…”We should be cheering each other on, such as you do, rather than diminishing someone’s success by implying that they don’t have it as hard.” I could not have said it better! You do get my point entirely! Thank you for that!

      Liked by 1 person

  5. Pingback: It’s All Relative (Or, I Refuse To Be A Victim’s Victim) | RainCloudMom's World

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