If you always do what you’ve always done, you’ll always get what you’ve always got
Many people who live with fibromyalgia are hugely frustrated with how they are viewed and treated by the healthcare system. Comments about being disbelieved or belittled by healthcare practitioners, including specialists, are common. Experiences like these are what drive people living with fibromyalgia to become self-advocates.
If you have not yet embraced becoming your own advocate, here are some compelling reasons to do so.
- Pain-adapted patients don’t look like they are in pain. People who live with chronic pain don’t show it like those with acute pain do. Your adaptation should not be a cause for disbelief but sometimes it will be. Advocacy can help you school those who are stuck in “seeing is believing” mode.
- Fibromyalgia is still invisible. Despite research advances demonstrating physical and physiological anomalies, the tests needed to find these are not available in most clinical settings. This contributes to the ongoing difficulty in diagnosing fibromyalgia and understanding why it causes the symptoms associated with it, including significant pain and extreme fatigue.
- Doctors don’t always know how to help. Doctors can be prone to frustration when a difficult-to-detect condition also proves difficult to treat effectively. If it sometimes seems like your reports fall on deaf ears, it might be because you are being tuned out due to frustration. Since treatments have side effects and don’t work equally well for everyone, it can be frustrating to a doctor to repeatedly “fail” in attempts to help someone. This can lead some health practitioners to blame the patient rather than the treatment or the condition.
- Advocacy keeps you focused on progress. Making change can be difficult and persistently pursuing a treatment that does not lead to lasting improvement wastes your precious energy.
In the traditional model of healthcare, patients present their symptom descriptions to a doctor and passively submit to treatment. Since this tend to results in crappy healthcare, you have little to lose by becoming more assertive in your dealings with the healthcare system.
Be Willing to Help Yourself
Insisting on a specific form of treatment, such as pain-killers, while refusing to use others, such as movement or dietary change, can raise red flags with healthcare providers. Be willing to try everything that you practically can and provide specific feedback on how well or poorly these things worked for you.
Have Your Own Plan
Resources such as My Pain Plan can be helpful for identifying treatments and personal changes you’d like to try. Sharing this plan with your doctor can start a productive conversation that helps your practitioner to understand you better, leading to more effective treatment.
Keep Records and Bring Them To Appointments
If you feel like your doctors don’t listen to you, it could be that they read better than they listen. Doctors love data, and sharing yours with them could bridge communication gaps.
Here are the kinds of things you should record:
- What diagnoses you have, when and by whom you were diagnosed.
- Changes in symptom patterns and severity.
- The type, dates and effectiveness of all treatments you have used such as medications, diet, exercise, physiotherapy, psychotherapy and others.
- Dates and results for tests along with the reasons the tests were ordered.
- Observations you have about your condition(s).
- Questions you have about your illness and/or therapies.
Advocacy: A Healthcare Essential
Modern medicine is too complex for the old passive style of patient experience to continue. People who live with poorly understood conditions such as fibromyalgia will especially benefit from self-advocacy because they often have more knowledge and expertise about their illness than those providing healthcare. Being responsible for your health requires that you take an active role in managing it.