We, patients with chronic illnesses, know we’re not easy patients. We know it's difficult for you to truly understand the full impact of our illnesses on our lives. We know you can’t ‘fix’ us. That’s OK- we understand that it’s not your fault. We apologise if sometimes we really desperately want you to fix us and put you in the difficult situation of having to let us down; I’m sure you can appreciate that living with difficult symptoms for years on end can sometimes make us desperate. As our doctors you are the ones we turn to, but we know deep down that it’s not that you’re not trying or that you’re withholding a treatment that could make us so much better, science just hasn’t provided the much-needed answers yet. We know that there are people out there working hard to solve the mysteries of our conditions- and we are very grateful to them- but when every day of our lives is difficult in the meantime, we get frustrated by the slow progress sometimes.
Please don’t be scared of us- you might not be able to fix us, but you can help us, so please don’t abandon us and leave us to fight our illnesses alone. Help us with the symptoms you can help with. Refer us when you are unable to help but think someone else may be able to. Despair with us when nothing can be done, but try to help us to see a way forward.
When we come to you with a new symptom, ask us whether we think it might be related to our chronic condition, but please don’t assume. Sometimes you might need to overrule us if it seems that we are blaming our chronic condition for something it is unlikely to be the cause of, or if we develop a common symptom of our condition for the first time. Discuss with us whether we feel that further tests are necessary- we know our bodies better than anyone, so are often best placed to make the decision as to whether something is likely to be serious. We are also subjected to more tests than most, and live with more uncertainty, so unlike other patients, we might be more willing to go for the option of ‘see how things go’. It’s important for us all to remember that just because we have a chronic condition, it doesn’t mean we won’t develop another unrelated condition. Many of us are actually at an increased risk, either because our condition alters our immune function, as a result of the medications we take or because of the lifestyle changes our condition necessitates (e.g. immobility).
Medications can be a burden for us. Popping so many pills can feel unhealthy, make us feel dependent, and can be a constant reminder that we are sick. If we ask to come off some of our medications, discuss the options with us. Explain the risks and benefits.
On the other hand, if we come to you about a specific symptom, it is normally because it has become unbearable. We will probably have already tried everything we can, and have resorted to coming to you for help. You aren’t our first option (because we don’t want to constantly bother you), we come to you when nothing else is working. When we come to you in these circumstances, please don’t turn us away without giving us something different to try, because we are often at the end of what we can cope with alone. If the relevant medications have possible side effects, tell us and let us make a decision. If they would react with another medication we are on, discuss options with us.
We aren’t like your other patients. We don’t come to you to be cured. You aren’t a stranger we rarely meet. We don’t see you as some divine being who knows everything and can cure everything. We have seen you look helpless. We know there is plenty that you don’t know. We are vulnerable, because we rely on medical professionals to keep us functioning as best we can. We know that we are a currently unsolvable challenge.
We ask you to be patient with us, to work with us and to treat us with respect and dignity. We ask that you see us as partners in our medical care, but ask that you don’t leave us to deal with this alone. Please bear with us and provide information for those that need it, to allow us to continue with employment or education to the best of our abilities, if possible, with the appropriate support, or help those that need them to apply for the benefits they need, so that they can live with a reasonable quality of life.
We aren’t asking for a cure, we’re asking for care.
Patients living with chronic illnesses
Note: this is purely based on the thoughts and feelings of one chronic illness sufferer- me- I share this on behalf of all sufferers but appreciate that some sufferers may feel differently about some of the topics mentioned. Inspired by Dr Rob Lamberts' post: A Letter to Patients with Chronic Disease (http://more-distractible.org/musings/2010/07/14/a-letter-to-patients-with-chronic-disease) which I think is a must-read for chronically ill people to understand a doctors perspective, plus it gives some useful tips on dealing with doctors as a chronically ill patient.