Cancer
Rounds of chemo can be long and it may be difficult for family to always be present
letting the patient choose what they want to share (but it's still okay to ask a little)
Sickle Cell patients may experience frustrations with healthcare providers who may or may not be giving them the care they feel they deserve
not denying patients experiences, and validating both their feelings and frustrations
Patients with GI issues may have a special diet that doesn’t allow them to eat certain foods
avoiding topics about food and eating if the patient isn't comfortable
Patients with Cystic Fibrosis may experience stunted growth which leads to a smaller stature because CF causes them to burn calories quickly and they cannot absorb all of the vitamins and nutrients that they eat
avoiding conversations about how young a CF patient may appear
It’s very common for transplant patients to feel guilty, frustrated, or disappointed after receiving a transplant
trying to center the conversation around the exciting things they have been waiting to do, and the people they hope to share this with
Let patients take the lead in conversations about their illness/diagnosis
being aware of how not everyone is comfortable having these conversations
the frequency of crises can vary
remembering that patients may look at their long term goals as impossible the more they are admitted
many autoimmune illnesses can take a long time to diagnose and understand
refraining from giving suggestions on what you think could help or “cure” their illness
CF can involve long treatments and hospitalizations
avoiding topics about big events that patients may have to miss due to their treatment
Depressive episodes can occur frequently during the process of waiting for an organ as the process is long and many have expressed a fear of not receiving the organ in time
being aware of when questions like "how are you?" or "how are you doing?" can be more harmful than beneficial
at times patients have limited mobility or amputations that restrict their ability to do things like sports
recognizing how it can be uncomfortable talking about things that require mobility
the sharp change between feeling healthy and having a crisis can heavily affect someone's mental health
AI diseases are considered “invisible illnesses” so not all symptoms may be apparent
being aware of assuming patients "don't look sick"
CF requires a certain level of care and resources, many CFers like to stay at a specific hospital
remembering how this can affect things like traveling, studying abroad, summer internships etc. (let the patient take more of the lead here)
PTSD is also very common in patients after a transplant