How does ankylosing spondylitis affect your relationships with others?

Ankylosing spondylitis accounts for half of all cases of spondyloarthritis, a group of conditions belonging to the family of inflammatory rheumatic diseases.

It is an autoimmune disease caused by a disturbance in the body's immune defenses which leads to permanent inflammation of the joints, spine and pelvis. It manifests itself through periods of flare-ups alternating with periods of remission. 

The main symptom of ankylosing spondylitis is a progressive, inflammatory backache, which wakes patients up at night and makes their mornings difficult due to joint stiffness. The fatigue caused by the disease is also significant. These symptoms may prevent the patient from carrying out simple everyday tasks.

It is therefore crucial that people with ankylosing spondylitis are well looked after. 

The patient's entourage: how can they help?

From a medical point of view, the entourage refers to any person close to the patient, who has a positive relationship with him or her. This may or may not be a family relationship. It may be a friend, or someone the patient loves and cares about. 

A spouse, a sister, a son, a cousin or a friend... all these people are part of the patient's entourage. 

They provide their presence, affection, help and support during the various stages of the disease. 

All people around the patient have an important role to play in supporting him or her. In addition, members of the family and friends become the ones whom the medical and paramedical teams can turn to if they need information or help.

However, being close to a chronically ill person can be both physically and psychologically demanding.

How does ankylosing spondylitis affect the patient's relationships with others?

Everyone is different and bears the consequences of their ankylosing spondylitis in a different way. The first symptoms, diagnosis, relapses and the effects of the treatment are difficult moments both for patients and for people around them. 

Unfortunately, people around you are often affected, relationships become complicated and can change dramatically. People's reactions may seem incomprehensible. For a married couple, for example, the intrusion of the disease into their life sometimes causes tensions in their relationship, the patient starts feeling guilty, and the spouse powerless. 

Below are some of the comments from Carenity members who have ankylosing spondylitis or who are close to people affected with the disease. They all talk about their relationships with their loved ones.

People close to the patient can be very involved and can be a great help when it comes to managing the disease and its consequences. 

"I live alone with my daughters, and without asking any questions, they take turns, one does the cleaning, the other the cooking, etc."

"In my family we are "lucky"!!! 4 sisters, 4 ankylosing spondylitis diagnoses, so at least we understand each other, and everyone takes care of everyone!"

"What I most appreciate about my partner is that he forces me to get moving and not to sulk."

Some people feel guilty, they think they are or were genetically responsible for their relative's ankylosing spondylitis. They think they have done something wrong or simply feel guilty for not being ill, for not suffering instead of their loved one. 

"My parents blamed themselves for a long time and would have liked to know where I got it from."

"My mother feels responsible for my condition, even though the form of my illness is not hereditary."

"My condition kept getting worse until I was diagnosed, then I got the treatment, but now my son has the same symptoms and it's been a real blow to me."

Others may experience difficulties in supporting their sick relation. They feel helpless, do not know what to do or how to be helpful.

"I've tried everything and anything to help my partner have a better life.

"Sometimes I feel like I'm bothering her, could someone tell me how I can broach the subject?"

According to several comments left on the Carenity forum, sometimes the relatives of people with ankylosing spondylitis prefer to ignore their loved one's disease completely and act as if nothing had happened, even going as far as to make them feel guilty and accuse them of exaggerating their symptoms and seeking attention.

"I am married to a military man, and I must not say that I am in pain when I suffer..."

"They will probably never understand, that's the way it is, and that too we have to accept."

"The indifference of those around you is terrible and unforgivable, when you love, shouldn't you care about the person you love?"

"My wife left me when I was diagnosed."

Sometimes it is the person with ankylosing spondylitis who finds it difficult to accept his or her illness, to explain it to those close to him or her and to ask for help. Indeed, suffering isolates, dependence on others can make people feel ashamed, not all patients can accept the fact that they have to rely on others because of their symptoms, so they reject any help. 

"He wants absolutely no help at the moment."

"Psychologically, it is a very difficult disease because it is invisible. When you're young, you become an old man before your time and you don't have a future anymore, at least not the one you hoped for."

"The less you talk about it, the better off you are!"

"What I can't stand is the pity of some people, I don't like to be spared even if it feels nice."

Some people affected by ankylosing spondylitis live their daily lives relatively well, the disease has allowed them to see the future differently, to prioritise the important things and to continue living normally. 

"Ankylosing spondylitis is actually doing us a favour, that's my positive side talking, not only does it build the character but it also allows us to better understand those around us."

"Whatever the suffering, unfortunately we always bear it alone, so we simply must do what we want, especially when we want it and while we can!"

"Nobody around me realises the seriousness of my disease because I try to cope with it alone as much as possible."

"This pain, even though I hate it, has made me stronger, more serene in the face of life, we are not guilty of our disability and neither are others, so let's remain pragmatic and think about how we can improve our daily life."

More and more often, doctors recommend therapeutic education for patients with chronic diseases. It helps them to cope better with certain situations, to learn how to monitor the course of the disease and also how to make people around them aware of the constraints of the disease, the treatments and the effects they may have.

Family and friends also need support, which is why it is advisable to see a psychologist or a doctor if communication becomes difficult or if there is lack of understanding. 

The aim is to support the patient and accompany him/her as best as possible throughout his/her journey with the disease, because a chronic condition such as ankylosing spondylitis is easier to accept and live with if the patient does not have to deal with it alone.