Petra – Disabled & Coping with Breast Cancer
To be diagnosed with cancer was certainly no “walk in the park”, but I kept on motivating myself with the following:
- I am not the first or the only person who was ever diagnosed with cancer…
- I knew of many women who had travelled the cancer road WITH a smile…
- And… I had overcome my acquired disability and “walked” out as a much stronger woman, with a clear focus for the future…
Yes, the diagnosis, the abrupt operation (with absolute no foresight regarding what was to follow), the treatments, the loss of energy and the grief, was a huge challenge.
But my BIGGEST challenge was none of the above. It was peoples’ misperceptions, words and actions regarding my disability that proved to be the most devastating, in the first 18 months after my Breast Cancer diagnosis.
Fighting Misperception: Cancer Diagnosis Not as Devastating as My Disability
At first NOT ONE PERSON (except the surgeon) discussed the cancer or the impact on my life! Nobody mentioned my grief. It was as if the cancer did not exist. Everybody was emotional about the fact that I had acquired a disability “and now this!”
Everybody had something to say regarding why a person with a disability, may not have cancer. It was often mentioned and in the process it felt as if my cancer became a secondary issue to my disability.
I was grieving because of the cancer and absolutely fine with my disability!
Fighting Misperception: My Disability More Devastating than Losing a Breast
On the other side of the coin: Some people could not understand that I grieved for the loss of a breast. Their perception was one of “but you overcame your disability, this must be a breeze….” I was often asked how I can “complain” about the loss of a body part (that has a HUGE impact on your sense of being a women and your sensuality), if I can’t walk.
My experience was that my disability was constantly used as a measurement of my permissable grief!
Fighting Misperception: Women with Disabilities Asexual
Another impact on my life and especially my emotional wellbeing at the time, was that other women (able) could not understand that I saw my breasts as an expression of my womanhood and my sensuality. I was asked why I wanted breasts “if you couldn’t have sex”. Even if I disclosed that I was a married woman, the perception that women with disabilities are asexual weighed more.
This misconception really added to my grief, as I suddenly found myself in an environment where I was perceived as completely asexual, with absolute no right to my womanhood.
Added to this was a shattered self-esteem, feelings of inability, loss of a body part, severe nausea and exhaustion, insecurities regarding my sexuality and my ability to fight cancer and it became a devastating and VERY disabling situation.
Loss of Independence Due Side-effects of Treatment
Another challenge I faced was that I needed BOTH arms to propel my wheelchair, and with the mastectomy it was impossible to use my right arm for 6 weeks. This left me dependant on others for everything.
So in my case the cancer also caused a complete loss of independence. I think the hardest part was the fact that I needed assistance with everything, including bathing. When it was bathing time, I did not have the time to grieve on my own, and worse, whoever assisted me saw my scars and missing breast. This left me so vulnerable… I was not ready to look at myself in a mirror, and I was in a situation where I HAD to allow someone else to see…
Few Medical Centres Equipped to Screen Women with Disabilities Adequately
A challenge that I still experience: only a few medical centres have medical equipment and technology to perform the necessary tests (mammograms) on a woman with a mobility impairment and who cannot stand. (99% of the machines cannot move up and down and if you cannot stand to enable the medical staff to perform the mammogram, they simply pull and stretch you until your breasts can reach the machine…
I still believe that if the testing facilities, for the mammogram that I had, 4 months prior to my diagnosis, were accessible, I would have been diagnosed earlier.
How can a correct diagnosis be made when your breasts can’t even reach the machines?
CANSA & WAND – Creating Awareness Among Disabled Women to Reduce Cancer Risk
There is a big risk of late diagnosis of Breast Cancer among disabled women, as this group of women is not always targeted during information sharing campaigns, as the focus remains on their particular disability. Also many misperceptions abound…
CANSA supports WAND’s efforts to bring attention to this matter and seeks to reach disabled women through our awareness campaigns. Read more…