Holly is a very active, vibrant woman with CF. She works as a social worker in mental health. She also has a keen interest in sexuality and disability.
Could you tell our readers a little about why sexuality and disability is an area that has so caught your interest?
In my work as a social worker I have the privilege to work alongside a lot of women who are survivors of child sexual abuse, including myself. I have great respect and admiration for these women who are working hard to learn how to create healthy, nurturing relationships despite their childhood trauma. Sexuality, love and relationships are such key facets of life which we all should have the opportunity to participate in, if we desire to. There has been a longstanding myth that people with disabilities are not sexual. This is obviously completely untrue and I try to challenge this myth everyday.
What are some of the BIG issues that you feel people with CF often want to discuss but perhaps find it difficult to broach with their clinician or with friends and or partners?
Emotional issues; such as fear and loneliness, the fear of been a burden, the experience of being different from everybody else, the belief that no-one else really understand you, the fear of not being good enough, and of course pain and disease progression. Most of these feelings are part of the normal human experience that most people feel, at least some of the time over their life, but for us with CF these issues may be particularly pertinent.
The whole beauty myth about the perfect body and look is very challenging to our vanity, particularly when unwell.
Are there some ways that discussing potentially embarrassing topics could be discussed in an easier way?
In the domain of sex and sexuality, CF can cause a lot of potentially tricky and embarrassing body reactions, such as incontinence, chronic thrush, poor body esteem, flatulence, bad breath, a perpetually dry mouth, fertility issues, pelvic floor weakness to name but a handful. Fortunately a lot of these can be managed with the right treatments.
In terms of sexuality and relationships, CF can be a very hard task master, demanding a very high degree of bravery, honesty and intimacy with partners. Do I want to be having sex and then have to stop to cough up phlegm, or because I’m breathless, or have to deal with a bloated, painful stomach or lines and tubes coming out of me? Hell, no. I’d rather be swinging and singing from the chandelier but I simply don’t have the lung capacity for that. So I have to find a way to talk about this.
In this way, clinicians can set great examples and model how to talk about tricky subjects. ‘Embarrassing’ topics need to be named, and discussions should be instigated and led by clinicians as part of the review process. I don’t think its fair or best practice to expect patients to bring up these topics on their own.
I would also highly recommend ongoing mental health screening of all people with CF and I would assume that ALL patients’ wellbeing and mental health/wealth are effected through having a chronic illness.
There is little emotional preparation for declines in health and generally a poor response to mental health issues. Cultural attitudes of hospital staff generally only look at the physical manifestation of CF, not the emotional consequences which greatly affect the way we manage our treatment and view ourselves.
Do you have any tips in discussing embarrassing topics with new partners?
I guess at 41, I would now say , go into partnerships slowly, talk about stuff as friends first as it can be easier to tell people about what it’s like to have CF when the relationship is not so loaded, test the water so to speak. I’m usually very candid about some of the difficulties I face so there are no surprises. It can be easier with friends because the expectations are different and we’re not tied up in the myth of the “happy ever after”. I also find that nowadays, most partners have gone and researched stuff themselves on the net. It’s important to discuss what they have read as it may not apply to your particular situation and they may have read stuff that has freaked them out.
Calmly naming things as they simply are, I think helps. Such as, “This is really embarrassing for me to talk about but…..” is a good way to start. Also, “Have you noticed that sometimes I…..” Often I find that the issues that are causing me a lot of insecurity and worry, my partner has never even noticed. I had an interesting conversation once when I asked a partner, “What’s it like to have sex with someone with CF? Turns out there were some good things that I hadn’t thought of before. Yippee!
Do you have some tips to help balance CF and a good life?
Primarily it’s important to remind myself frequently, that I am not my disease. It is a facet of my life but that I am much MUCH more than that.
I try to maintain balance by realising that I can do (nearly) all things but that I can’t do all things at once. For example I may spend a few months where I socialise more, but then the next few months I’ll socialise less and pick up more work. What’s not negotiable? Treatments and sleep! As soon as I start scrimping on sleep my health starts to decline.
If I have a decline in my physical health it also affects my mental health, and I feel sad, flat and unmotivated. It’s harder to exercise and do treatments, because I’m tired and feel crappy, so my healthy can rapidly begin to spiral downwards. That’s where I find it’s really important to fall back on discipline around treatments and exercise. Discipline trumps motivation every time. Motivation waxes and wanes, you can’t depend on it!
For me, recognising when I’m becoming unwell, and going into hospital early works really well. I improve quicker and my mood stays higher. The sooner I get into accepting that I’m unwell, having a little cry and then pushing on , and admitting myself to Charlies, the quicker that I can get back to the sweeter aspects of my life.
Article from RED Magazine, Edition 1, 2015.