Sickle Cell Disease News Forums Forums Using Our Forums I Have Sickle Cell, I Am Not Lazy.

  • I Have Sickle Cell, I Am Not Lazy.

    Posted by viviane-salzman on September 1, 2021 at 10:20 am

    I have been in and out of the hospital since November of last year.  I have been transfused several times due to pain crisis and severe anemia.  I have not been able to work.  I felt obligated to resign from my charge nurse position at a mental health shelter this past June.    Just when I started to regain my strength, my integrity was questioned.  My mother-in-law called me lazy, assuming that I enjoy staying at home and do nothing.  She went as far as asking me “who’s money are you spending?” After enduring her assault, the stress sent me right back to square one.  Back in the hospital, more sickle pain, more blood transfusions, and the feeling of sadness sets in.

    How would you deal with this situation?

    viviane-salzman replied 2 years, 2 months ago 4 Members · 8 Replies
  • 8 Replies
  • tito-oye

    September 1, 2021 at 1:58 pm

    Hi Viviane,

    I am so sorry that you are going through this. I know it is not easy at all!

    From my experiences I’ve realised how my emotions have a direct effect on my health, meaning when I’m happier I feel great, but when I am feeling down and feeling stressed, my health worsens.

    I think in this situation you should try and explain to her what you are going through when it comes to your health. If it is a case where she refuses to understand, you might have to consider distancing yourself from her.

    It is easier said than done, but your health should always come first. If there is anything or anyone, that is actively worsening your health, try and minimise your exposure to it/them.

    I would also recommend talking to your partner about how you feel around her. They may also try and reason with her, and support you in any decision you may make.


    • wendell-robinson

      September 10, 2021 at 7:55 am

      The struggle is real…

      Thing is, YOU can’t tell her about what we deal with. Someone else will have to inform her.

      The problem is, we look okay, even when we are far from okay. On the outside, at least. (Unless we’ve hit that 9/10 pain threshold.) So, whatever you tell her will seem like justifying. A hematologist will be the best source of information, for her. That and a thread of articles from newspapers and magazines (including obits).

      It’s a tough situation. All you can do is walk in your truth and ignore the noise. (I know, easier said than done.)


  • viviane-salzman

    September 3, 2021 at 3:03 pm

    Thanks Tito!

  • victoria

    September 6, 2021 at 12:18 pm

    I am struggling with this myself. It is not that everyone else calls me lazy, but that I am my worst critic. I cannot help it. I am always thinking others think I am lazy or asking myself am I being lazy or am I just sick. I always feel so tired and that I never want to do anything. Sometimes my energy is high and I feel like I can conquer anything, but most of the time I feel like I just do not want to be there. Rather it is at work or talking to other people or surrounded by anyone. I just want to be at home in bed or laying down. I don’t want to do anything. I know I can function and then at times I do not feel like I am even there. I feel like a zombie. I never know what to do with myself and I am now thinking if I want to quite my job or not. I never know what to do! Am I being lazy or am I sick. I will never know.

  • viviane-salzman

    September 6, 2021 at 1:00 pm


    Thank you for sharing.

    What you wrote describes exactly what I used to go through.  Since the incident with my mother-in-law, I made a promise to be true to myself.  I no longer question myself about how I feel.  When I feel well, I do what I can.  When I feel tired or sick, I stay in bed for as long as I need to.  I do not care anymore about what others think.  As long as I am my genuine self, it is all that matters.  Only God is my judge.  I have read the other day that turning fifty years old has a lot to do with accepting oneself.  I am living my true self, and I feel happy.  I have been struggling since a long time with the decision to quit working; however, I was always concerned about what others would think.  I prayed a lot and the Lord helped me gather the courage to do what is best for me.  Now, I feel free!  It is my life, I do as I please.

    I hope you find the strength to decide what is best for you.

  • victoria

    September 7, 2021 at 9:13 am


    what did you end up doing? Leaving work? I have debated to leave my 8-5 job and focus on me and my passions. I fear not being able to help with bills or finances though. Where were you in your decision making? What made you decide to go that way, whatever way you decided?

  • viviane-salzman

    September 7, 2021 at 3:49 pm

    Hi Victoria!

    I had been wrestling with the idea of quitting my job for three years.  Not because I wanted to but because my body could not handle the stress anymore.  I could not keep working and taking care of myself, of my husband, the house, all at the same time.  I sincerely believe that things became harder for me after my 50th birthday last October.  At first, I gave up working full time thinking that I could handle a part time position but still, I was unable to stay healthy.  I had a long talk with my husband about it but I could sensed that he was not a fan of the idea.  He wanted me to keep on trying to work.  I would be working for a month, and be in the hospital with a crisis.  The cycle would repeat itself again and again.  After so many blood transfusions, I end up with iron overload, something I never had to deal with before.  At that point, I just made my own decision.  I felt like if I did not stop pushing myself to work, I could have been in bigger trouble.

    Victoria, I really love to have a lot of money because it makes me feel independent and respected.  However, trying to make money and ruining my health felt senseless.  I was ready for whatever way things would turn out with my husband.  So far he has been supportive.  I applied for disability in June but I have not had a response yet.  I am using my savings when I need something.  I do not make unnecessary purchases.  When my car lease is matured, I will get a cheaper car.  I am a believer Victoria.  I believe that “all things work together for good to them that love God…” Roman 8:28

    I wish I knew that things would turn out this way for me.  If I did, I would have saved more money.  I would have been smarter on how I spent my money.  We are not like other people.  We get tired easily and our health is very unpredictable.  So having a balance on what we do is important.  If you are worrying about paying your bills, you should have a plan.  Do you mind me asking in what part of the world you live?  How old you are?  What you do for a living?  Can you apply for disability and other assistance?

    I am truly sorry you have to deal with this.  Sickle cell is no joke!

    Have a blessed day and be safe.


  • viviane-salzman

    September 10, 2021 at 8:51 am

    Thank you so much Wendell.

    Unfortunately, I come to realize that implicit bias plays a major part in my relationship with my mother-in-law.  She is racist and she admits it.  You know how some see us – lazy, ignorant, etc.  She is an educated woman.  She reads more about sickle cell than I do.  She also went with me on an appointment to see my hematologist.  He explained to her in detail what sickle cell is, and what my particular case entails.  She is unable to accept my limitations and categorizes me as being lazy.  My decision is to cut ties with her because being around her is toxic. It is unfortunate but it is reality.  I am grateful that my husband understands and is supportive.

    Stay healthy.


Log in to reply.