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You need to be allowed to cry and let it out: scream, kick, hide in bed for a day or two. Just don’t get stuck there. The medications you take may add to depression. Some carry suicidal ideation as a side effect. Keep in mind that this feeling of desperation could have chemical causes that will go away if treated properly.
It is important that you have the full support of those around you. If they tell you they are concerned, listen. Don’t hesitate to ask for their engagement and support if you find yourself feeling this way. They cannot know how bad it is for you if you don’t speak up. Don’t suffer in silence.
Acceptance: You can only hibernate for so long. The days keep coming and you realize there are still things to live for. It is important to stay engaged in your life, your hobbies, your friends, your work. You will reach a point of accepting the limitations you cannot change and find the courage to do the things you still can. Reach out to others with the same condition through local support groups, even virtual support groups. You can seek to optimize what you can do within the new limitations. Life will go on. You can still find joy in the small things and the people you love. By learning all you can, you can become an empowered patient. You can work with your health care providers to make sure you are getting optimal treatment. There are remarkable people in the world overcoming the severest of handicaps to make a huge difference. Let them be your role models.
Recognizing the signs and symptoms of anxiety and depression can help you take the necessary steps to combat them.
The challenge, while in severe chronic pain, is to remember you are more than the afflicted body.
The challenge for the caregivers is to help you manage the medical issues, but not lose sight of the person inside the afflicted body.
Learning how to repair or keep your relationships healthy is crucial to the success of managing this condition.
Understanding when and where to vent is another crucial tool.
There is a difference between living with chronic illness and losing yourself to the chronic illness. Using the illness as a reason to withdraw or become selfish is toxic. Reach beyond the physical manifestations to remain engaged in life and your relationships.
Chronic illness is a marathon. The challenge is to set smaller, day to day, month to month goals. Make a list of the things you could still experience, see, or accomplish. Plant goalposts in your future. Treat overcoming each hurdle as a success.
Do not hesitate to accept professional assistance in dealing with this disease or the medication side effects. It is a sign of strength, not weakness, to ask for help when you need it.
Cognitive therapy can be very useful in helping people manage chronic illness. The mind has the power to rewire and reprogram the body.
“Patients with chronic medical problems have many physical, social, and psychological problems. Physicians do not always have time to address all of these within a single consultation. This fact, combined with the fact that some presenting problems have no apparent solution, can be overwhelming for physicians, who may not know where to start. Setting an agenda is one method for maximizing the chance that a consultation will make some progress toward solving a patient's problems”
1. White CA. Cognitive behavioral principles in managing chronic disease. West J Med. Nov 2001; 175(5): 338–342.
Treating your symptoms and medication side effects may take a combination of pharmaceutical approaches and therapy techniques.
If possible, consult a psychiatrist/psychotherapist that has shown interest in the disease or one who has experience in treating people with chronic illnesses.
If you cannot afford to see a doctor or therapist, please seek out some clinics that have reduced rates. There are many affordable places to go. You can call 1-800-SUICIDE (1-800-784-2433) or 1-800-273-TALK (1-800-273-8255) to get listings for clinics in your area. Do not hesitate to call.
Although early intervention can reduce long-term disability, approximately 50% of SPS patients eventually have to use a wheelchair as a result of pain and immobility. Depression due to loss of quality of life is seen in over half of the patients. In addition, hormone and neurotransmitter imbalances can contribute to depression and anxiety. Medication can negatively affect mood and memory. Co-existing endocrine disorders can also affect mood, memory, and sleep-wake cycles.
The anxiety and fear response in stiff-person syndrome can be mistakenly viewed as psychosomatic illness. Due to the level of medications required to treat the spasms, patients are sometimes mislabeled as drug-seeking or malingering.
Untreated or under-treated patients are at a high risk of suicide. Sudden withdrawal of treatment causes a rapid escalation of symptoms which can be life threatening.
Make sure you are familiar with the emergency lifelines that are available. There is always help and hope.
If possible, consult a psychiatrist/psychotherapist that has shown interest in rare diseases or one who has experience in treating patients with chronic diseases (i.e. dystonias or movement disorders).
Educating yourself and your loved ones about stiff-person syndrome may help take some of the anxiety out of the equation.
The immediate concern is how much stiff-person syndrome will interfere with your ability to work, function, perform activities of daily living (walking, eating, dressing), and provide for your family.
Chances are, you have been dealing with a level of disability for months or years before you are given the diagnosis. The first thing to consider is that this status is not likely to change quickly. There should be no immediate worsening and, with the right treatment, you can expect the symptoms to level off or even improve. Progression tends to be slow.
The exception would be stiff-person with PNS or PERM variants. The co-existence of paraneoplastic syndrome could actually mean that your symptoms go away with the resolution of the cancer. In the case of PERM, it can progress quickly.
Receiving the diagnosis of an incurable, rare disease such as stiff-person syndrome is undoubtedly a blow. It will begin or exacerbate the grief cycle.
There are several phases of the grieving process. You can get stuck in one phase or cycle through them several times as your condition changes. Hopefully, through educating yourself about the disease, you can feel empowered sooner and accept the fact that you can still lead a fulfilling life within the new limitations.
Denial and Isolation: “The diagnosis cannot be true.” This stage can last a long time as you go through the differential diagnosis phase and as you are bounced from specialist to specialist. Denial can be useful at first. It can push you to make certain you have not been misdiagnosed or encourage you to fight for the right tests and treatment. Understanding what stiff-person syndrome is, and isn’t, can help you form an opinion. However, refusing to seek care or reluctance take the appropriate medications can cause complications later. The side affects all sound scary. The risk of “addiction” and “tolerance” are frightening as well. It is important to understand the difference between pleasure-seeking recreational abuse and the body’s desperate need for medications to right the biochemical balance or intervene in a system malfunction that has grown toxic. Just as the body might need insulin or replacement hormones, it sometimes needs replacement neurotransmitters or other chemicals or nutrients. The sooner you are appropriately treated, the better you will feel and function.
Anger: “Why me? What did I do to bring this upon myself? It isn’t fair. I’m a good person. I work hard. I didn’t do anything wrong.” The answer is: it isn’t your fault. Stiff-person syndrome is a complication caused by malfunctioning body mechanisms. You did not bring it on and you do not have the power to wish it away. This diagnosis makes you feel incredibly vulnerable. It strikes at your fear of being unable to take care of yourself, much less others. It is easiest to lash out at those whose love we are most sure of. You may direct anger at the doctors or health care workers who you feel failed you or don’t care about you properly or enough. The health care system is not perfect, especially for patients suffering from rare diseases. It is easy to make them the target of your rage.
This phase is the most rife with conflict for you and your loved ones or caregivers. The symptoms fluctuate. Your capacity fluctuates. Roles and responsibilities within the family shift. It is difficult to redefine the dynamics at home, at work, with children, and friends. You may have to give up tasks and activities you love as your ability to complete them is reduced. Financial worries kick in. It is important to hold onto to each other tighter and not lose each other in this process. Troubled relationships can become more troubled. Professional assistance may be required to help navigate and renegotiate the family dynamics and deal with the upheaval. You may have to make changes in your career to accommodate the new reality. It is easy to lapse into depression rather than become proactive and creative in finding ways to meet the new challenges.
Bargaining: This is the “if only” phase. If I do this, then it won’t be true. If I get a third opinion. If only I pray hard enough, make amends, atone, this burden shall be lifted. This is similar to denial. It may be a time when you are tempted to try almost anything and that can be dangerous. It is important to not experiment on your own or believe everything you read on “psuedo” science sites. False hope is worse than accepting the reality of the situation and working within real parameters to achieve optimal levels of function.
Despair: This is when all seems lost. You must come to terms with the new limitations and with the realization that the disease is incurable. Worries set in: financial, emotional, a fear of abandonment. Worry that your spouse or partner will not care the same for an ill partner. Worry that your other loved ones and friends will leave you behind as their lives go on. You need reassurance the most during this phase of grief. You need to know that you are still the same person you were before. You just have new physical limitations and that those can be managed. This is a time when loved ones and caregivers feel the most lost as to how to help you.