By Resham Khiani
36-year-old Gibraltarian Sarah Cumming has been suffering from this illness since she was diagnosed at 15 years old. Plagued by brain fog, a severe exhaustion from the minute she wakes up, along with intense body pain from head to toe has, most of the time, prevented her from completing everyday tasks. It is a devastating disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems.
A normal, healthy person can complete the ironing, go to work or visit friends without a second thought. For an ME sufferer, they must conserve their energy for everyday activities, which rapidly depletes. This is a snapshot of the battle she endures in the mornings: “Regardless of whether I wake up at 6am or 10am, it will take me a minimum of an hour or two, sometimes three, to be able to get out of bed due to muscle aches, nausea, pain and brain fog”. Planning her day is just another task, of many, which she cannot complete because it depends on “how [her] body is functioning that day”.
The vague, “dismissive” responses are pointing in the direction of no cure.
People with ME/CFS often describe this experience as a “crash”, “relapse”, or “collapse”. Symptoms include difficulty thinking, problems sleeping, sore throat, headaches, fever, sensitivity to light, dizziness, or severe tiredness. It may take days, weeks, or longer to recover from a crash. Sometimes patients may be house-bound or even completely bed-bound during crashes, and all that time, not knowing exactly when they recover.
One of the hallmark symptoms of ME is a bone-crushing, continuous fatigue that makes it difficult to complete simple tasks, such as getting out of bed or brushing teeth. Sarah describes it as “the most overwhelming fatigue anyone would experience”. Most days it is past midday when she is able to get up and dress herself – a big achievement for her energy-depleted body. Taking a shower is easy for most of us, we do not give it much thought. However, in Sarah’s case, apart from needing assistance to get out of the shower, it takes her anything from “20 mins to an hour to recover”. This is more than just feeling tired – not matter how much sleep you get, the body still remains in a permanent exhaustive state.
ME/CFS can cause a variety of other symptoms, including chronic pain, issues with concentration and brain fog, sensitivity to light and sound, issues with digestion like bloating and nausea, and blocked sinuses. Currently, there are no definitive diagnostic tests to determine whether you have this illness, and disappointingly, there is still no FDA-approved treatments.
As a result, sometimes visiting the doctor can be an emotional ordeal, considering the doctor who diagnosed her “never followed up afterwards”, leaving her to depend on the advice of online charities. Luckily, she found some doctors who now give her the emotional and medical support she requires. In fact, her GP is not the issue; it’s when she visits a consultant that Sarah realises the vague, “dismissive” responses are pointing in the direction of no cure.
In turn, this leaves her feeling “emotionally and physically drained, especially if you’re having to protect yourself against what could be a hostile response to your diagnosis”. Not only does she feel isolated in the medical world – most of the time she feels the “disbelief” coming from people around her. And all this revolves around people’s assumption that it’s just tiredness, when in fact it’s a body that is malfunctioning on all levels, with meagre levels of energy.
Aside from her complex, unpredictable illness, Sarah has embraced certain parts of it. For instance, due to her suppressed immune system, she developed Alopecia Areata, which means she now wears wigs or scarves: “My hair loss doesn´t bother me, I like the fact that I can change my style every day!”.
Despite what life has thrown at her she still has a brilliant sense of humour, enormous levels of gratitude for the medics who constantly help her and hopes one day she can continue working for a Christian organisation in Australia. Aware of the fact ME fluctuates between mild and severe, it’s truly amazing to see Sarah remain hopeful and determined to reach out and build the future she wants.