Your Disease Does Not Have You

Sabiha Mahmoud is a relentless activist, a photojournalist, a filmmaker, a cartoonist, and a wonderful mother living in the United Kingdom. She recently published this moving open letter about illness- from those suffering to those care-taking. 

Dear comrades and friends,

In the past months I have been and still am witnessing another kind of suffering, the kind that exists in the wards of sickness. I thought I had seen it all when parachuting in and out of conflict zones with my camera, but what you don’t see is the suffering that doctors and nurses heal behind the clinical hospital doors, and that which patients endure to the point where they literally break, die and are reborn the next day, and there are those that never do.

You go in for a week’s treatment and you’re in a ward with people who are terminally ill, who are doing their best to come to terms with it. When the week is over, you go home and you see your family and your friends and everything’s normal and familiar. It’s too much. You think — one world can’t possibly hold both of these lives, and you feel like you’re going to go crazy when you realise the world is that big and it can fill with the most terrible things whenever it wants to. (I can imagine this is what doctors and nurses feel, too).

There are many other really sick people here in the hospital. I made each person a “get well soon” card apologising for anything I may have sent in their general direction when I was last here for treatment, and that I hope that wasn’t a contributing factor to their illnesses — they laughed. I also wrote a letter of complaint on behalf of all the rheumatology patients who suffer from aches and pains in their bones, saying how silly a place the second floor is for them to put people with bad bones who had such trouble walking and climbing stairs.

I remind everyone that suffering and illnesses are not exclusively ours even when we claim them to be. There are others who are going through the exact same thing, if not in a far more troubling situation. You are not your illness. You have an individual story to tell. You have a name, a history, a personality. Say it loud and clear: “I have ‘insert disease’, the disease does not have me.”

Staying yourself is part of the dreadful, yet beautiful experience.

As for the healthy, it seems so normal to fend off the ordeals of others by saying, “it is not happening to me. I’m not ill. I’m not in a war. I’m not dying.” The reality is, whether you believe it or not we are inextricably linked to the suffering of one another.

I remind those in pain to remain patient with your carers and doctors. Nobody can understand your invisible illness, and do not expect anyone to either because they can’t see it. Just hope for kindness and compassion, and be thankful for the helping hands you are getting. And even if they can see it, just imagine how much more cruel people would be if they could visibly see the disease that you desperately want rid of.

Be happy! Yes, I know what you are thinking right now — “How can you be happy with what you are going through with your health?”

Because surely in the correction of God there can only be happiness. And I am living and breathing that correction through the ease that hardship is hopefully bringing.

So with that thought, remain humble to the fact that the pain has been shared amongst fellow sufferers. For those who are in good health, also remain humble to the fact that you are not dealing with a struggle that leaves you utterly incapable of doing anything else. It is a struggle in which your mind and the rest of your body have a lengthy, tiring debate everyday over what your soul wants to do and what your body won’t allow it to.

In the world of the healthy, winning an award is a memorable achievement. In the world of the chronically and terminally ill, walking to the bathroom unaided or going an entire day without throwing up is a remarkable milestone.

I should tell you an invaluable way of helping, and the best gift you can give while visiting or otherwise. Although flowers have remained a long tradition and are incredibly sweet, they die quickly whilst they lay next to the ill person’s bedside. I’ve watched flowers rot away because I haven’t been able to water them, and I don’t particularly like the act of having them picked out of the ground and sentenced to instantaneous death.

So, the best acts you can do for the sick are things like driving them to doctors’ appointments, delivering cooked food or looking after any part of their family responsibilities. Anything that helps save a bit of time and energy for the ailing persons to focus on their health.

Fellow sufferers! We may not have realised this blessed condition, as the struggle may be still going on. Let us not give way to despair. Let us hope on, let us pray to see God’s hand in our sickness, and to learn those lessons He designs to teach us.

If He withholds the blessing of health then He will give the more precious one of taking that soul to Him. And if He sees fit to continue our pain and suffering He will impart strength equal to bear them.

And it was Maya Angelou who said it beautifully: “Listen to yourself, and in that quietude you might hear the voice of God.”

Peace and love,

Written by Sabiha Mahmoud