No one asks to be “chosen” for chronic illness and/or pain. There are, however, choices you can make which can either empower you or allow you to be a victim of circumstances. Not feeling you are in total control does not mean you have no control but most of life is varying shades of grey.
After you are diagnosed you will feel emotionally different. Sometimes the medications that are used to treat the disease magnify the emotional changes. Waiting – for the medications to work, in doctors’ offices, hospitals, etc. – will add to the feelings of loss of control. Sometimes we have to miss a lot of work days, which can be especially disconcerting if we define who we are by our work. It will be important for you to start to accept a certain amount of lack of control over aspects of your life which you previously took for granted. You will adapt by using positive coping strategies.
First you will come to accept the things you cannot control. The serenity prayer used by AA and NA is often helpful here. The future is uncertain for everyone, but not the same as in this new way for you. Your primary support system may or may not be accessible for you in the ways you need it. How do you tell people who are not afflicted in this way how you honestly feel? When someone says, “My you look really good; you must be getting better”, how do you respond? You will want to explain the disease and its unpredictability to them, but will they really get it? Will they be able to understand? Will they want to understand? Can they really handle the truth? If not, and you have not come to terms with the illness yourself, this will be a major problem for you. But, remember, this problem will not take away all of your control unless you allow it to do this.
My own standard response is “thank you” to a compliment and “why don’t we talk about how YOU are feeling?” to “How are you feeling?” “I’m fine” or “I’m here” may also be appropriate, depending on who is asking the question. My husband, who does not have a chronic illness, has a standard response when asked how he is: He just says “absolutely”. Some people don’t even realize he has not answered the question. For most people, “Hi; how are you?” is just a greeting. They don’t really want to know, so just take it as a greeting and don’t feel obligated to educate them or to get things off your chest unless an exercise in futility and frustration is what you want to use your precious energy on. Some people rejoice in the opportunity to make it a production. That choice is yours. Just remember that using your energy in negative ways saps the positive energy too. If you can focus your energy on positive coping you will regain more control.
Coming to terms with your illness does not mean you have to like it. It is acceptance, pure and simple. This does not make you a “walking disease”; you are a cognitive (thinking) human being who just happens to have this rare illness. You will continue to have feelings, and these feelings will get hurt. It is all part of being human. Waiting for treatment or for transportation, and being more dependent for certain activities of daily living (ADL’s) can be frustrating. Keeping a book handy or crossword / word puzzles, music, letter writing will let you feel you are not wasting your time. Some people take their computers with them. Work on using the time constructively (something you can control to an extent), and don’t allow yourself to feel that precious time is being taken from you. Be prepared for the waiting. I don’t go anywhere without a book or journal articles. A lot of people have these new fangled cell phones that do almost everything, including computer access (something I remain technologically challenged to do). The choices are endless, unless you choose to limit yourself.
When you find yourself waiting and waiting, anger and frustration can easily take over, but they don’t have to; it is your choice. I liken this to being stuck in traffic, especially if I am running late for an appointment. I have a choice: I will be late no matter what, but I can arrive calm or an agitated nervous wreck. I find deep breathing and neck/ shoulder relaxation exercises very easy to do in the car. Soft music can also help. Some people enjoy books on tape.
How you choose to live affects the quality of your own life, of course, but it also affects the quality of life of those closest to you. It is not always a matter of the glass being half empty or half full; sometimes it is just a glass with water in it. Some days will be better than others, and none of us, even with the same disease, have identical symptoms or pain thresholds. Remember that most people are afraid of change, even positive change. Changes can certainly be viewed as threatening, or they can be viewed as challenges and opportunities. The scenario is a matter of choice.
Positive growth will always come from working from your strengths. Identifying weaknesses and problem areas is important in creating goals, but you will need to identify your strengths (including any support systems) in order to achieve those goals. Your strengths (e.g., intelligence, persistence, support system, etc.) will aid in coping with anxiety, mood changes, the symptoms of the illness and negative medication side effects. With new coping skills, adaptations, and relaxation techniques (deep diaphragmatic breathing, imagery, etc.) you can break the cycle of a downward spiral and adapt to the ongoing and unpredictable changes you are facing in your life.
If you are not already in some kind of counseling or therapy, or even if you are, you can make up your own” treatment plan”. You will need to make five columns. Identify at least three priority problem areas in your life. This will depend on your own symptoms and situation and also that of others in your life. In the second column, write down your long-term goals. In the third column, state measurable short term goals. For example, “I will make at least two positive self-statements every day” would be reasonable if you are having a lot of negative self- thoughts. If you are isolating yourself, “I will have social contact at least 3 days/week” may be reasonable for you. In the fourth column you will write how you plan to make positive progress toward your goals. Will psychotropic medications, or at least a psychiatric evaluation, be part of how you intend to reach your goal? Will you read certain books or use self-help workbooks to help you better understand cognitive distortions and cognitive psychology? ( If you do choose a self-help workbook, the ones by David Burns are excellent and very understandable.) In the fifth column you will put an estimated date by which you hope to achieve the short term goals. Psychologists generally redo treatment plans every six months or more frequently. And, remember that these goals are not written in concrete. Your problem areas and goals may change by time and/ or unexpected changes in your life. Having a plan that is reasonable and allows positive completion of the short term goals is helpful in giving you more control in your life. Once you successfully achieve a goal you can concentrate on the others, or you can add a new short term goal. Again, there are a lot of choices here.
Some areas which may be affected include: Increased stress levels; concentration problems; decreased self-esteem; increased worry and high anxiety, and feeling isolated and misunderstood. Some people close to you may complain that YOU complain all the time, while you are thinking “If they only knew the things I am keeping inside. . .” These are probably the things to talk to a professional about- psychologist, licensed therapist, counselor, or spiritual counselor. There are always problems we feel we have put to rest long ago, but now they may be brought to the forefront. In therapy (usually in conjunction with an antidepressant or a combination of antidepressants prescribed by a family doctor or psychiatrist) you can freely talk, vent, cry, ask questions, or otherwise express feelings in a nonjudgmental and trusting environment with a professional who is LISTENING TO YOU. You will learn to pace yourself, rational (versus emotional of distorted thinking), how to live a proactive and fulfilling life, relaxation methods, and positive and personalized coping strategies. And, don’t forget to exercise – even if this just means stretching a couple of times a day or going up and down the steps a few times. You can do push ups. You may start with one or two (on the knees for women), but you will be surprised at how quickly you will gain strength. You are not training for a marathon (At least most of us are not.), but you will want to try to not lose flexibility or strength even if you are not interested in gaining strength.
Coming to terms with your illness won’t happen overnight, but learning and using positive coping/ relaxation techniques can be learned quickly and utilized often. Coming to terms with the uncertainty of life changes brought on by chronic illness will challenge you to be proactive and to use the cognitive skills all humans have. You will be more resilient regarding your treatment and in WAITING for doctors, tests, test results, hospital registrations, prescriptions, answers. . . Instead of getting perturbed by waiting for others, PLAN around the known and be ready for surprises. You may find you have a lot more control as you come to terms with your illness and yourself.