The Emotional Toll of Chronic Illness

Living with a chronic illness is about more than managing physical symptoms. It is an experience that touches every part of life – body, mind, relationships, identity. Yet often, a large majority of the experience remains invisible to others, even those closest to you.

Friends, family, and co-workers might see the hospital visits or hear about the diagnosis, but they don’t always see the silent grief, the daily frustration and confusion, or the exhaustion that comes with simply trying to live your life.

Invisible Symptoms = Invisible Struggles

Many chronic illnesses are “invisible.” You might look healthy on the outside, even on days when your body is screaming for rest. Because others can’t see your pain, fatigue, or limitations, they may unintentionally minimize your experience. Many with chronic illnesses may have heard the words “but you don’t look sick” and almost wish others could see so that they may understand.

Invisible Symptoms can lead to:

• Feeling misunderstood or isolated
• Guilt about saying “no” to invitations or responsibilities
• Fear of being labelled as unreliable
• Strained relationships
• Constantly trying to explain yourself to others

Anxiety About One’s Body

When your health is unpredictable, so is the future. Many people living with chronic illness carry a quiet undercurrent of anxiety. This may relate to the future, to relationships, to fears relating to finances or a loss of independence. ‘Normal’ sensations/experiences/pains are hard to interpret. It can be difficult to know whether these are normal everyday sensations, or a sign of something going wrong internally.

Specialists, Tests, and Treatments

The diagnostic process is not always simple and straight forward. Some individuals can take years to be diagnosed. During the process, one can be subjected to invasive and painful medical tests. 

Diagnosis can bring about a change. Being able to name what is going on in one’s body can be a turning point. Having a name facilitated treatment. However, treatment can also take a toll. Medicines, chemotherapies, immunologics, DMARDs etc. all have their side effects.

Emotional Toll of Chronic Illness

The emotional experience of chronic illnesses can leave one feeling alone, anxious, angry, low, and feeling a sense of brokenness. This is compounded with physical effects of a disease.

Individuals can experience a loss of the person they use to be as they adapt to a new standard. Relationships may change, as one cannot keep up as they have previously. One’s sense of who they are can suffer because of a chronic illness.

If you or someone you love is going through this ordeal, know that you are not alone and it is okay to ask for help. There are organisations such as Rare Disease South Africa and support groups that may be of use. Therapy can also be of great value.

                Steve