I came across this article from a Lupus website (I’m sorry I forgot the link) and it has helped me in many ways. Every word in that article spoke right through me, it is exactly what I am feeling. One of the reasons I started blogging is to write all the feelings that I have been keeping to myself, emotions that I cannot reveal to my family and even to my closest friends. I have always been strong and I want them to see that I have enough courage to face everything but I am not always strong, many times I just break down in tears.
Feelings I Keep To Myself
A beautiful article written by Mark Flapan, Ph.D.
When family members or friends ask, “How are you?”, they usually want to know if you’re in any particular pain or discomfort or if you’re any worse or better off physically than before. Seldom do they have in mind your emotional state. Yet at times, your emotional reactions to your illness are more stressful than are the physical effects.
While you and your family are doing everything you can to treat and cope with your physical ailments, there may be more you and they can do to relieve your emotional distress. You can learn to better understand and accept your feelings–to understand without shame, self-blame, guilt, or recrimination.
To promote this understanding, I’ll describe the commonly experienced emotions of persons with a chronic illness, recognizing, of course, that not everyone experiences all the reactions I’ll describe.* In describing these emotional reactions, I may be giving voice to thoughts and feelings you’ve never expressed or possibly even acknowledged. This may upset those of you who are able to maintain a positive attitude by putting aside disturbing thoughts and feelings. This article is for those of you who need the emotional relief of a shared understanding.
* (The emotional reactions described pertain primarily to chronic disorders acquired after childhood.)
DISTRESSING EMOTIONS
ANGER–You’re angry for having an illness–but whom should you be angry at?– God, fate, the whole world? You’re angry at doctors because they have no cure for your disease. You thought doctors knew so much, but now you realize they don’t. What’s more, they don’t seem particularly interested in you except as a “case.” When you go for a visit, they’re either rushed and don’t explain enough or say things that frighten and upset you.
You’re also angry at family members and friends who at times are unavailable when you need them and who expect more of you than you can do. You wish they could live in your body for a day or even an hour so they could understand what life is like for you. Then maybe they wouldn’t say or do things that hurt your feelings. You’re also upset by the thought that they might resent all they have to do for you–and you feel hurt and resentful in return.
SELF-BLAME–You may blame yourself for your illness. Maybe you brought on your condition by not taking proper care of yourself. Or maybe God’s punishing you for something you did wrong–but you don’t know what. You just feel it’s your fault.
SHAME–If you take your illness as a sign of weakness or as reflection of a flawed character, you’re ashamed to be ill. If you pride yourself on being independent, or on doing things for others, you’re especially ashamed if you need others to do things for you. Moreover, if you have a visible disfigurement or deformity you may be painfully self-conscious and ashamed.
FRUSTRATION–If you have a disability that requires you to rely on others for your daily needs, you’re constantly frustrated. You’re frustrated because you can’t do these things for yourself and you’re frustrated because others don’t do them promptly enough or exactly as you would like. Also frustrating and depressing as well is to be unable to engage in activities you once enjoyed, or to use abilities in which you once took pride.
SELF-DEVALUATION–If you’re unable to do what you used to do, you not only feel frustrated but inadequate too. And, if in addition, you’re a perfectionist with expectations you can no longer meet, you may discourage or even hate yourself.
SELF-PITY–You feel sorry for yourself if you can’t lead a normal life like everyone else. You feel cheated and unfairly treated if you’re unable to finish your education, get married, have children, earn a living, or pursue a career. And you can’t help envying and resenting others who can do all these things.
GUILT–You feel guilty if you can’t fulfill your responsibilities as a wife or husband. Guilt may be unbearable if you’re a mother unable to do all you think you should for your children. Guilt is intensified if you feel you’re a burden on others–especially if you need help in your personal care and hygiene. And you should sense resentment on the part of family members on whom you depend, you not only feel guilty but hurt as well.
FEAR–If your disorder is potentially progressive, you live in dread of the future and are alarmed by any actual or imagined change in your condition. If your condition is life-threatening a cloud hangs over your head. You’re also plagued with fears relating to your family. If you have young children–you worry–what will happen to them if something happens to you? If you’re dependent on your parents or partner for personal care, you worry–what will happen to you if anything happens to them? Although you know it’s unlikely, the thought has occurred to you–what if your partner gets tired of taking care of you and leaves? What would you do then?
EMOTIONAL RELIEF
Even though your emotional reactions may be commonplace, if you criticize yourself for your feelings, you may be suffering more than need be. If that’s the case, you gain both understanding and self-acceptance by sharing your feelings with a sympathetic family member or friend who is sensitive to your feelings and knows how to listen. You can even use this article as a basis for talking about your feelings.
You can also lighten your emotional burden by sharing your feelings in a support group or with others individually through NORD’s “networking” program. If these sources are not sufficiently helpful, you can benefit from professional counseling. Counseling may not only relieve the pains of guilt, apprehension, anxiety, self-disparagement, and depression, but may provide new perspective for living and coping with your disorder.
It’s important to keep in mind–while you’re not responsible for your physical disorder–you are responsible for what you do or don’t do to help yourself live with it. I hope you’re a good helper.
