Any kind of chronic illness can be hard for any patient to deal with. From Lupus to multiple sclerosis, fibromyalgia to beta thalassemia, getting treatment, keeping up with medical needs, watching their diet, and even maintaining normal energy levels can be a significant challenge.
A patient with a rare disease will find this even more difficult. Finding a community that understands them and that they can identify with, discerning the right treatment from all of those offered, and mandating hope is really challenging.
Here are some tips for working through the intensity of having a rare condition.
Seek the Right Treatment
Mentioned above, seeking the right treatment can be one of the biggest challenges of having a rare condition, but with the help of the doctor and online tools like XpertDox, a patient can be assured they find the most qualified specialist near them.
Sometimes if the right treatment cannot be found locally, the patient may have to travel or even move if the treatment will take place over an extended period of time. These are some things to be aware of, but ones that should not keep a patient from pursuing treatment with the right specialist.
A patient should also trust their instincts. In most cases, it is wise for them to seek a second opinion and pursue a number of options to determine what is right for them.
Keep Physically Fit
Hospital stays are horrible for a patient’s body. Being in bed all the time tends to cause muscles to atrophy from not being used, a loss of flexibility, and can even cause skin issues, persistent infections, and other conditions.
Besides that, the food is often not the healthiest, and a patient with food allergies or special diet restrictions will find few food choices. Doctor’s orders and restrictions keep them from making their own decisions about fitness and health.
Even when home, energy levels and side effects from medication can often keep patients from the activities they love. Following a strict diet and monitoring caloric intake carefully are essential parts of staying fit.
Keep the Mind in the Right Place
Mental attitude can have a huge impact on anyone is able to work through the treatment of a rare disease. This means nourishing the mind every day is an essential part of recovery. This can involve a number of things.
- Read: Reading good motivational books can help, but for some, it can be overwhelming. Reading good fiction can also provide an escape, or even studying in a new field or researching.
- Write: Journaling or even documenting experiences on a blog is often cathartic and helps with charting progress and avoiding discouragement.
- Play Games: Board games, puzzles, Sudoku, all of these things can help keep a patient’s mind active and nimble besides serving as a distraction.
Sometimes brain fog from medication or pain can be overwhelming, making mental tasks frustrating. SImple tasks are best at least to start with, and the patient can move to more complex ones as they are able.
Nourish the Spirit
Besides mental and physicself-careare, an individual’s spirit needs to be nourished as well. This can mean a lot of different things to different people, from meditation or even yoga to prayer, scripture, and even an engaging with a spiritual counsellor.
Regardless of the religious connection or faith, keeping a person’s spirit healthy helps them stay in balance and maintain physical health. Habits that nourish the spirit should be practised daily.
Unleash the Power of Saying No
When working through the treatment of any condition, especially a rare one, the loved ones and friends who care for a patient personally are going to want information and progress updates on a regular basis.
The problem with this is that it can be both energy and time consuming for a patient to keep up with these updates. Even group texts or emails can be exhausting to create.Having a designated friend or family member who helps with these updates is invaluable during difficult recovery times, but so can a simple stance of “no news is good news” or “I’ll update you later” is also acceptable.
There is nothing wrong with having an update schedule and using text, email, or even blog posts as a method of sharing information. Regular updates allow questions that come in at these scheduled times to be either ignored or deflected.
Also, the power of no applies to doctors and treatments as well. A patient knows their own body better than anyone, and what it can take. Sometimes hospitals will order procedures just because it is standard practice, and there is nothing wrong with saying no to those things.
It is easy to feel like things are out of control when under the care of a specialist or multiple doctors. Nothing could be farther from the truth. Medical advice is just that: advice. Patients should feel free to make their own decisions from that advice, and even choose to go somewhere else entirely for treatment.
For patients working through treatment of a rare condition, the power of no can be extremely liberating. Dealing with a rare disease and working through its treatment will be intense. It takes a rare intensity to do more than just survive but thrive under these conditions.