Scariest Parts of Getting Diagnosed
Written by: Amanda Phillips
Getting a diagnosis of some chronic illness, autoimmune disease, or cancer has to be one of those life moments that absolutely upends the world. This is not even the diagnosis per se but rather the overwhelming fear of the unknown that really hits with full force. In that instant, as you hear those words, the bottom seems to fall out, and everything which was clear now becomes unsure.
You may be thinking, "What does this mean for me? How is my life going to change?" That is okay to be afraid, and you certainly are not alone in these fears. Below, we discuss some of the most common fears surrounding a diagnosis, and we provide some validation and support for these emotions.
1. Fear of What the Future Portends for Your Life
Uncertainty About the Future
The immediate reaction to an actual diagnosis often is, "What now?" There is tremendous uncertainty about the future of the illness and what it might involve concerning lifestyle, relationships, and career. Will I be able to continue working? Will I still be able to do anything I want? It is unnerving when you do not know what will happen or how much your life will change.
Lack of Control
Another fear associated with diagnosis is that of losing control over one's own body. All of a sudden, your body is not doing things in precisely the same manner in which it once did, which may be quite anxiety-laden. Long-term planning can barely be envisioned since one cannot be so sure about changes in the dynamics of his or her disease or condition; thus, the helplessness and powerlessness make the patient's life grind to a halt.
2. Fear of Treatment and Its Side Effects
The treatment—be it surgery, chemotherapy, radiation, or lifetime medication—is extremely frightening. And along with these most often comes that other package of problems: physical pain, side effects, or emotional strain. It is extremely scary to think how all this can ravage one's body and mind.
Medical Anxiety
Just for many, the frequent idea of medical appointments is anxiety. The needles, the hospital visits, the long treatments—it just feels so overwhelming. Besides, there's concern about how much time and energy such treatments will require, hence adding the stress associated with maintaining the illness.
3. Fear of Losing Independence
One of the worst features of dealing with a chronic illness or cancer is the absolute dread of loss of one's independence. Simple acts of going to work, socializing, and even taking care of oneself may seem like impossible tasks. It's hard to accept the fact that one will need to depend on people for support when they had always been independent.
Fear of Losing Physical Capability
Some chronic illnesses render the individual completely drained. A massive psychosocial toll could be paid in the form of fear of no longer being physically capable of continuing to do whatever was enjoyed—for instance, jogging, taking vacations, or just hitting the clubs with friends. Fatigue makes a core alteration in your sense of self and at times gives the feeling that a part of you is gone.
4. Fear of Being Alone on the Journey
Feeling Alone in Your Journey
One of the biggest emotional battles that needs to be fought is the fear of being isolated. Chronic illness can be so very isolating in that it's usually invisible to those around you. Friends and family simply might not understand or grasp the pain that one is going through. You may fear that nobody really "gets it," and that kind of fear with misunderstanding can be incredibly lonely.
Losing Social Connections
Aside from that, with your progressive disease, you could also be fearful of losing your social network. People will stop inviting you to anything or get-togethers because they either do not know how to support you or because they assume that you will no longer be capable of attending. You may eventually feel no longer part of others' inner circles and get left out when they have gotten together.
5. Fear of Financial Burden
Mostly, some form of chronic disease or cancer invariably gets linked with financial anxieties. Besides, there might be an increasing medical bill along with complexities in insurance and out-of-the-pocket expenses to drive one into stress. Even if one has insurance, the cost of treatments, medicines, and hospitalization can easily get prohibitively expensive and leave you wondering if it is covered under coverage.
Job Security and Income
Other than working, the stress about job security is compounded. What's the time off going to be required for treatments or recovery? Am I going to lose my job? The anxiety of losing income and support for oneself financially only puts a bigger weight on the emotional burden of a diagnosis.
6. Fear of Stigma and Judgment
Invisible Illness Stigma
Invisible is a very good word to describe how many people with chronic illnesses or autoimmune diseases have to live. There can be a fear that nobody will believe you and others may even think you exaggerate symptoms. The comments that burn the deepest are along the lines of, "But you don't look sick," serving to invalidate a person.
Fear of How Others Will React
Added to this, is the fear of how others will be with you when they know you have an illness. Will others treat you differently? Will they pity you, or will nobody even mention it at all? It's difficult to tell how others might react and that possibility of judgment perhaps makes you reluctant to even tell anyone about your diagnosis.
7. Fear of Guilt and Being a Burden
Guilt About Being a Burden
People feel guilty about even being sick, never mind when one needs extra help from loved ones. You may feel that now you are now a burden on the family, friends, or caregivers. Perhaps the thought of causing others added stress—financially or emotionally—may weigh heavy in your heart.
Guilt Feelings About Not Being Able to Do Enough
Then, there's the guilt of not living up to expectations; these could be professional or personal. It may be calling off plans, missing events, or otherwise failing to keep previous responsibilities that make a person feel like letting others down, and that guilt might be hard to handle.
8. Fears of Progression and "What If?" Thoughts
What if the Disease Worsens?
Some of the largest fears are "what if?" thoughts that run through your head constantly. What if my condition gets worse? What if treatments stop working? The fear of progression is real, and it can be really a case of worry about how the future is going to turn out.
Anxiety Over Not Knowing How It Will Play Out
It’s hard to live with an illness when you don’t know exactly how it will progress. That uncertainty about how your health will evolve and how it might impact your life in the future can lead to overwhelming anxiety.
9. Conclusion: Validating the Fear and Finding Strength
These are real fears, and anyone with a long-term illness, autoimmune disease, or cancer would be scared, concerned, or anxious. It is only normal that one should be scared, concerned, or anxious—this is part of the learning process about your diagnosis.
These fears will be a significant part of your life, so it's important to find ways of living with them. Having a support system, getting into a medical team that you can trust, and doing things a little at a time can all help to diffuse some of that fear and give you a sense of control. It won't have to be borne alone—finding others who know what you're going through can be a true comfort.
Remember that you are stronger than you may feel just this minute, and though the journey will be hard, know support is available, and paying attention to what's in your control will get you through what's ahead. You are not alone in it; there is an entire community ready to help you at every turn.
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