Reproduced with kind permission from the book Taking Charge of Fibromyalgia - A Self-Management Program for your Fibromyalgia Syndrome** by Julie Kelly, MS, RN and Rosalie Devonshire, MSW – two health professionals who live successfully with Fibromyalgia.
Only recently has medical science begun to understand the underlying mechanism for Fibromyalgia. For many years it was not well understood; consequently, many people with this disorder spent years searching for a diagnosis and effective treatment to relieve their pain. The average length of time from onset of symptoms to diagnosis has been approximately eight years.
Unfortunately, during this pre-diagnosis period, many people have met with countless healthcare professionals who were insensitive, disrespectful, uneducated, and who blamed the patient for their pain. They were told they were crazy, “It’s all in your head,” and other damaging comments.
If you have had this experience, it is important for you to know you are not to blame for your symptoms. You are not crazy. You have a real medical condition, and you deserve respectful medical treatment. The damaging comments that were directed toward you were completely inappropriate. You have a right to be angry about this mistreatment.
It is also important for you to know that receiving this type of treatment over a prolonged period of time may cause you to distrust and feel angry toward all medical professionals. This anger and distrust, if left unchecked, can interfere in new relationships with healthcare professionals and refuel the cycle to be repeated.
Guilt and shame are also painful emotions felt by many people with Fibromyalgia as a response to disrespect and blame by medical professionals. They are the feelings “I must be bad because I have this,” or “I must somehow be at fault for having this.” These feelings can lead to depression if they are prolonged and left unchecked. They can negatively impact one’s adjustment to living with this medical condition.
Isolation is another painful experience people with Fibromyalgia can experience, as a result of not receiving the understanding needed to live with chronic muscle pain and fatigue. It is the result of not feeling like there is anyone available who believes and understands what you are living with day after day. Feelings of isolation and loneliness are also extremely common because Fibromyalgia is invisible to the naked eye. No one around you can see or feel your pain.
It is important to take some time to evaluate who has given you disrespectful care in the past, and what responses you have developed as a result of mistreatment. It might be helpful to make a list.
How can you express your anger toward those who have hurt you? You could write them a letter and express how their treatment hurt you, how you now have received a correct diagnosis, and what they could have done which would have been more helpful. Some people choose to send the letter, and others do not.
It can help to put some closure on the relationship, as well as help you to diffuse some of the anger toward the ones who have caused the pain. You may want to send information to educate them on Fibromyalgia so they don’t continue to hurt others with this condition.
However you choose to deal with your anger, it’s important to focus it constructively toward those who hurt you, not toward anyone else. Continuing to feel anger for prolonged periods of time hurts you. Find constructive outlets to ventilate your anger. Try writing in a journal. Find people with whom you can talk about it. Anger is an energy that can be used constructively to motivate you to help yourself feel better, to help other people, and to be proactive as a healthcare consumer and in your program of self-care.
Lastly, you must not remain under disrespectful medical care. It will only continue to harm your sense of well-being, fuel depression and anger, and continue the cycle of distrust toward medical professionals. You deserve respectful care, and you must have it.
Seek out an understanding person or counselor to help you resolve any painful experiences or emotions. By getting support, you can work through your experience so it doesn’t continue to hurt you as deeply. Getting support can also help to reduce the isolation and depression that you may be experiencing. Remember to elicit support from those people who believe you and who are understanding. Tips: Working with Your Physician
n Prepare for the visit ahead of time to make the best use of your short time together.
n Be sensitive to your own symptoms and concerns and give some thought to the questions that you might ask your doctor.
n Keep a list handy to jot questions down between office visits.
n Consider other resources for information, such as your pharmacist for medication questions.
n As there is no magic bullet for Fibromyalgia, great patience is required to find a combination of therapies and medication to bring about improvement.
n Recognize that there will be inherent frustrations for patients and physicians when treating a condition that continues to hold many mysteries for the researchers.
n Realize much of your treatment is up to you: exercise, relaxation, stress management, pain management, pursuing additional therapies and treatments such as biofeedback, spray and stretch, and massage.
n Learn as much as you can about your own disease, since you are the one who will manage the day-to-day problems that occur.
n Actively manage Fibromyalgia-related problems, such as pain, sleep problems, etc.
n During office visits be prepared to ask for what you need to manage your Fibromyalgia. Be as specific and as concise as possible. Don’t ramble.
n Work with your physician to develop a plan of action should you have a flare-up so you can initiate treatment on your own. Can you increase your sleep medication or take ibuprofen for pain? What else can you do during a flare-up to reduce symptoms and feel better?
n If you are having symptoms of depression, inform your physician. Depression can further disrupt sleep cycles and will need treatment.
n Reinforce and thank the doctor for specific behaviors and techniques you find helpful. “I appreciate that you really listen to me, Dr. Olson.”
n Learn to ask for what you need from your physician. “Would you explain to me what can be done to help me sleep better?”
n Develop a good relationship with the doctor’s nurse and receptionist. Identify rules of the office: doctor’s day off and when the best time is to call and leave a message. Know the nurse’s name and ask for him/her when you call. Be patient if they are unable to call back immediately.
n Identify any bad feelings you might have about delayed diagnosis, insensitive treatment, etc. Resolve these if possible with the appropriate person, in person or by letter. In this way, you avoid carrying bad feelings toward healthcare providers into future relationships.
n Should you and your physician have difficulties, try to identify problems and work to resolve them. You can put your feelings into a letter if you aren’t able to express them in person.
n Avoid angry or defensive communication.
n If your physician has told you to return in three months, you can make an appointment earlier to discuss your questions or concerns if necessary.
n If a problem arises with medication or treatment, ask if you can call for an answer rather than make another appointment.
n Be assertive and take responsibility for your own treatment.
n Remember you are in charge of your own treatment program.
* Jenny Fransen, RN, is co-author with I. John Russell, MD, PhD, of The Fibromyalgia Help Book: Practical Guide to Living Better With Fibromyalgia
** Excerpted with permission from Taking Charge of Fibromyalgia - A Self-Management Program for your Fibromyalgia Syndrome Fifth Edition, by Julie Kelly, MS, RN and Rosalie Devonshire, MSW. Thomas J. Romano, editor. C2005 all rights reserved. Published by Fibromyalgia Educational Systems, Inc.
Disclaimer: This information is intended for education purposes only and is not to replace the services of a trained health professional. The authors and editor do not accept liability in the event of negative consequences incurred as a result of information presented in this handbook.