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Sick is not a competition.

 

Let’s say six months ago there was a meeting of people in the same boat as our family finds itself.

A group of people who deal with immune deficiency in one way or another

and we couldn’t go.

Ivy was in the hospital at the time.

I’m not a part of that group any more.

What happened was a cascade of events, which, true or not, filtered down to me in the small hospital room

and it hurt.

Rational is not a word I would use for myself when I feel as though my family is being attacked or judged,

so, I had words with the people involved, which included a person who I had considered my friend and Ivy’s then immunologist.

I also lost the proverbial plot all over the internet – mostly within the two online forums where those involved presided

and then I left them.

I lost a community and some people I had become close to and cared about

but in the end, I couldn’t deal with the drama.

I burned bridges.

Groups like that can become a place of one-up-man-ship.

“My kid’s sicker than your kid” mentality

and

“you have it easier because it’s your child who is ill and not you ”  kind of stuff.

One person even proclaimed that sick kids “get more” because they’re cute.

Things I’m not interested in.

Things that are exhausting when there is already so much to deal with in this world.

The head of the group said I needed to give the main person, who had caused my upset, a break because her child was staring down the face of a lung transplant.

Maybe I should have

but she didn’t give me a break when she was stabbing me in the back in a place where I was unable to defend myself or my family

because I was in the hospital with my septic daughter.

Sigh.

I guess in the world of immune deficiency, to quote another member of the group  ”sepsis is nothing – everybody has been septic and survived”.

Hindsight is a wonderful thing.

I should have been the bigger person, I suppose but even if I had have been, I wouldn’t be able to trust them again

and besides that – something like immune deficiency and how ill your child is because of it

is in no way a competition.

Regardless of what kind of PID or the severity of it

we should all be in it together, supporting each other through the similarities and challenges of the disease.

+++

The other day, after a mother had mentioned how sick her baby had been with a Summer cold,

another person turned to me and said;

“you must get really sick of people complaining about frivolous things like the snuffles”.

To which I had no answer at the time

but I’ve thought about it a lot over the last couple of days and I want to say

that it doesn’t matter what kind of sick your baby is.

Sick is sick.

Whether it be a cold or something else,

it’s all hard

and sad

and stressful.

If the child is unwell, the family feels it.

The parents worry

and that is a perfectly normal emotion to have when your baby is sick.

I don’t feel as though others have no right to be anxious about their children’s health just because Ivy struggles with her own.

All I feel is sad and sorry for the  child and the parents, that they have to endure that period of time when all is not right with their world.

Sick is sick.

It’s not a competition.

The only winner in all of this would be a healthy, happy child.

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25 Responses to “Sick is not a competition.”

  • Anne-Marie Cox (7 comments.):

    Repeat after me…
    SOME people are stupid.
    You are NOT the jackass whisperer.
    <3

  • As I have struggled with depression over the past few years, I have had to fight against my own thoughts and the comments of others who have reminded me that my life is not so bad. I have a lot to be grateful for (and I am) and I am certainly much better off than many others in many ways. Nevertheless, the feelings of sadness and being overwhelmed persist.

    One friend commented: ‘You shouldn’t be depressed because X’s life is much harder than yours’ is the same as saying ‘You shouldn’t be happy because Y’s life is much better than yours’. Both comments are pointless and incorrect. Our pain, our stresses, our sickness and our challenges are our own, just as our successes and highlights are. Our experiences don’t diminish or enhance those of others, although they can provide us with perspective and encourage us to be compassionate.

    Your life is so difficult in so many ways, although it also also full to overflowing with blessings and wonder. You need to do what you must to ensure that you can deal with the tough times so that you have energy to find joy in the good times. If others can’t do that, you need to respectfully leave them to their own issues.

    I’m so sorry that you have been left feeling disconnected from a group of people who can most readily relate to the challenges your family faces on a daily basis. I hope that you know that you have support and encouragement in other places that you can rely on.

    xxxxx

  • Kathy:

    Sick is sick, worry is worry, stress is stress and we all need to be supportive of each other.

  • mum:

    Health is a huge part of happiness, so when any family member or friend is sick, happiness naturally diminishes for all concerned. That is not to say, though, that whatever the nature of illness is suffered, more or less concern is felt according to the degree of suffering. Admittedly, some conditions can be of a more serious nature and constant or more prolonged, but that does not mean the anguish felt is any more than any other, nor does it mean that whatever degree of concern is involved should be subject to anyone’s judgement.

    You are right, there should be no contest, sick IS sick and until well being is restored, the veil of sadness,concern and worry cannot be lifted. xoxo

  • valarie kinney:

    A. Freakin. Men.

    I have dropped all yahoo or facebook groups centered around asthma or immunodeficiency.

    What I was looking for was support , information, and perhaps comraderie.

    Instead all I’ve found is drama and hatefulness.

    I don’t need more drama.

    Neither do you. I’m so sorry people are mean.

  • Watershedd (58 comments.):

    Personal judgement is based upon one thing – comparison of our life to that of another. When someone points out that “my child is sicker” or perhaps “so-and-so’s child is sicker” the comparison is based upon the commenter’s perception of what is happening. In reality, there is no knowing the full extent of the impact of anyone’s situation – sick or otherwise – without having lived their life.

    Walk a mile in my shoes – except to walk that mile would only give you the experience of now, not my past.

    Compassion ignores comparison – it’s about listening to the pains of others without judgement whatever our own dilemma may be. I think though, that people get angry and scared when someone they care about is ill and it generates all sorts of less than favourable responses when we ourselves are no longer coping.

    As for sepsis, it is far from nothing. It addles brains, steals bodily functions, induces pain and generates harrowing hallucinations. It is far from nothing. Anyone who says so is ignoring the true danger of a rampant infection.

    Not sure what kids get more of when they are chronically ill. More hospital time, more days out of school, more educational disadvantage, more phobias and more hang ups, I guess. More money? Yes, I think children’s charities and research do pull at the heart strings more than adult, but don’t hold that against the kids, they haven’t even had a chance to live yet; an adult has had at some life as an independent person without requiring the support of a parent.

    Cheer up, Tiff. I think everyone just needs a break, especially at this time of year. Bring on Easter, I say!

  • Veronica Foale (703 comments.):

    Yes. And thank you, as always. For your words, and your grace, and your general awesomeness.

    <3

  • Anna:

    Oh, I so get this. And I’m so sorry you’ve had to experience this too.

    On the flipside, I hate it when people are sick and they say to me, “I know I shouldn’t complain after what you’ve been through”, as if I wouldn’t appreciate that they are miserable being sick. It actually offends me when people think I wouldn’t respect their struggle just because I have an autoimmune disease that is “more serious”. Like you say, sick is sick, and any kind of sick is miserable.

    I wish humans could be more gentle with each other. Could just allow others to be what they are, without having to compare and compete.

    Good on you for getting out of there, as hard as I can imagine it would be to leave a support group. You don’t need that drama on top of everything else.

  • Carly Findlay (5 comments.):

    Great post Tiff, I feel the same way with some of the people in the ichthyosis community. It can be a big competition, and this is tiring. I had one woman tell me that she only wanted to meet me to prove that she has it worse than me. Just awful.

    And what a gorgeous picture of Ivy too. I hope she (and you) are doing ok.

  • Emma Fahy Davis (2 comments.):

    As always, I find myself nodding in agreement. Sick is relative, anything outside one’s frame of reference is scary whether that be an ear infection or a stubbed toe or sepsis or pneumonia. Sometimes I’m grateful for the familiarity of our hospital, I see all the anxious first-timers pacing the halls and while I know my kid will be there long after theirs is patched and dispatched, I feel more for them for whom the foreignness of the situation makes it terrifying than for us for whom it’s become part of our normal. It’s not about winning or losing, it’s about living the life we’ve been given.
    (PS. You make me glad I never got around to seeking out any PID groups, I think I’ll stick to the general one I already have)

  • river (194 comments.):

    You’re right, sick is sick, no question and certainly no competition.

  • Immy:

    Sometimes I find it really difficult to understand people.
    There are plenty of things in this world to be competitive about but sickness or happiness or general wellbeing is not one of them.
    Everyone is going through something. If it hurts, it hurts. If it sucks, it sucks. No situation is more or less important than another. I think that people need to invest in sport if they want to be competitive. Sickness calls for support and love and trust, nothing else.

  • Yvonne (3 comments.):

    Yes Sick is Sick and Hard is Hard for the person/family living that moment.
    Light & Love to you all.

  • rachel:

    Simply…. Amen!
    You said it well x

  • Georgia (2 comments.):

    Sick is sick. You’re right.

    Why anyone would want to have a competition about who is sicker is beyond me. Why anyone would want to win such a competition is something that makes no sense.

    I hope Ivy is doing well at the moment, and that you’ve got other support networks around you.

  • Wendy S (9 comments.):

    Well said.

    I hope Ivy is doing ok and that you all got to spend Christmas together at home.

  • Sue:

    Here, here, well said Tiff. I thought support groups were there to support each other not stab each other in the back but there are some people who, if they aren’t the centre of attention, cannot cope. There are all sorts of illnesses in this world and if we only saw each one individually and compared them to other illnesses as to whether they are worse or better there would be a lot of sad and lonely people out there. As you say, sick is sick and whether you are a child or an adult, whether it be mentally or physically sick, it’s all an illness and everyone should be able to support each other.

    Stay strong lovely lady, there’s enough love out here for you and everyone supports you xx

  • Tricia (169 comments.):

    Can you hear it? The applause that is coming from the other side of the planet? Applause that is resounding because you get it and expressed it so accurately here?

    Applause because I came to a similar conclusion a million years ago in the midst of what seemed an overwhelming and unending tragedy that somehow became more bearable when I stopped allowing others to compare my struggles with their own and started seeing them as more equal than I had at first perceived.

    Applause because in the midst of your angst you still have the composure to think of other people’s feelings and situations.

    Applause because you are an amazingly strong woman and a fabulous mother.

    Do you hear it? Because I think it is getting louder. ;)

  • jeanie (226 comments.):

    So not the same Tiff, but when I was younger and had lived a few different cities, people always asked which I preferred – and I discovered that comparing invariably ended up with the biggest negatives, and they are things that don’t need the focus – we have to always celebrate the positives of any place to avoid that.

  • Dianne Nunn (56 comments.):

    hugs and positive vibes coming your way. I have nothing to add except to say I am sorry people are so stupid.

  • BW aka Barbara from Boston:

    Lovely shot of the birthday girl. She is obviously growing bigger and lovelier, that is a treat to see. Glad you are all home. Hope Christmas was wonderful. Two holidays done and one to go. Yipppeee

  • [...] 4. Sick is Not a Competition – My Three Ring Circus [...]

  • SassyCupcakes:

    People can be incredibly disappointing. It’s awful you’ve lost a place of support. I hope the people involved read this and really think about their approach. Stress can make people crazy, but that’s no excuse for being horrible to someone else.

  • Denyse:

    Without Ivy having health issues which challenge you all, life would remain as constantly busy, changing & exciting & exhausting because that’s who being Tiff & Dave T is. Your life. For some people their lives are all about the illnesses & more.

  • Vee (6 comments.):

    ”sepsis is nothing – everybody has been septic and survived”.
    I agree wholeheartedly with all that you have said and find the above statement a bit narrow-minded. Not everyone survives sepsis. My daughter didn’t.
    http://www.kendrameiring.blogspot.com

    I hope you and your family were able to have a good Christmas at home and that there were no dramas. I think you and Ivy (and the rest of the family) are absolutely amazing.

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