When a close one, as a spouse, partner, parent, child, extended family or friend gets a diagnos that can affect the rest of your life. It’s not only the one who gets the diagnosis who gets ‘cast out in the unknown’. Also the loved ones are faced with the uncertainty of what now and the future will look like.
It’s not only the diagnosis that you have to deal with. The familys situation is being affected by maybe a change of income, the rest of the family gets a bigger responsibility when comes to household tasks. The life can get more filled with stress and worries. You can feel that’s unjust that you should have to live in that situation – that life is unfair.
I’ve talked about crises before. And coping strategies. You can read a little about coping strategies here. I know, it’s from the perspective of getting I diagnos. But also the ones who lives with that person or is close to that person, goes thru different phases of the crises. And that person who have a diagnosed family member that this post are for.
Your life is also affected. Your family member has been diagnosed with a disease that will never get away or it will be there for a long period of time. You will probably also be filled of feelings like anger, sadness, worries, depression amongst many other feelings. Feelings that are common in a state of shock over something. How you will go on from that notice of disease is just as individual as the reactions are for the one who’s gotten diagnosed. But there are no ‘right way’ to react. Our upbringing, our cultural traditions, our experiences from before are facts that effects how we react. As long as we’re able to come out of the shock, go on to the next phase.
We all have different coping strategies when we react to something; some will serve us well whilest others will lead to a long time, maybe a lifetime, full of misery. And every single person in this world will sometime during their lives be exposed to something tough to handle. Just look at our situation right now; the whole world is exposed to a pandemic! And all of us has handled with it in different ways. That is because we use different strategies to cope with a new situation and this disaster that COVID brought with it.
Everyone. Let me say that again; EVERYONE, can end up in a crisis. What leads to a crise is to be put before an important change of your life. Even ‘happily ever for the rest of your life’- people gets a crises. One day… Usually you get through the crisis by handle the challenges in a beneficial way. If done in a beneficial way it can come something ‘good’ of the situation, like experience. And as you know, not all experiences are that kind of experience you would like to have but yet we can have good use of it in our future. As a family you can grow closer, your bond to extended family or friends can grow stronger. Not all bad experiences are for the worst. Researchers looks at these responses we get due to the unwished event as a process started by the event.
It doesn’t have to be an overturning event that happens to you, but it is almost always about something that, in some way, changes your life. It can for example involve someone close to you that has died, a divorce, an unemployment or you or a loved being diagnosed with a chronic disease.
When someone gets a diagnosis most of the time it has been preceded of a time of the person feeling ill in some sort a way. This ‘warning’ may have arised years previous to the diagnosis or there haven’t been any symptoms, the person gets a diagnosis almost at the same time as they fell ill. Dyregrov is one who have talked about the effectiveness of the ‘warning’ – if the warning comes to early or being repeated over and over again and nothing happens it can be overlooked. In relation to a diagnosis it could be interpret as if the person who’s ill carries symptoms of an illness for a long time, he/she may think that it’s just the way he/she is feeling – that there’s nothing wrong with them. Maybe you or your significant other has seen a doctor who has told you that there’s nothing wrong which makes you think that the symptoms aren’t anything to worry about. We aren’t seeing the ‘danger’.
This false assumption, mentioned above, gives us a false feeling of security and if sense of security are too strong we may not percept the danger (illness) according to Janoff-Bulman (1992).
On the other hand – if we receive the ‘warning’ too late it can send us into panic and/or irrational behavior according to Dyregrov (1993).
In the stage of shock your body is trying to protect you from the pain the experience causes, both physically and mentally. You can lose your perspective of time and space. It can make your level of activity go down and you can lose your emotions. Just a few examples of what can happen if you’re in a shock. The shock can make you unable to make any decisions or it can make you take action without thinking about what the outcome may be. It can make you unable to accept, or even hear, what someone says to you. Memories from that moment you’re getting information of the illness can be lost to you – you don’t remember a single moment from that time when you met the doctors or the nurses. Or it can be that you’re remembering certain colors, the room you’re in and the tone of the voices from that moment you got the information of the illness.
Physical emotions can for examples be nausea, palpitations, muscle weakness, shortness of breath.
This stage can pass in just a second or be there for a long time.
When the first emotions like sadness, anger, fear or a mixture of them, comes the stage of shock is considered being over. During this phase it’s considered that we collect our strength and plan our next action. By doing this we’re trying to get our control back. This phase can be there for four to eight weeks and is said to be the most painful phase.
This period is very dependent of how we deal with the new situation that a illness throughs us into. We can be in this phase from weeks to several years. It is in this period we decide how to change our lives due to the diagnosis and we decide what our coping strategies will be. Subconsciously or consciously. The strategies can benefit us or it can lead to difficulties like substance abuse.
Also, post traumatic stress can occur.
I’m not diving too deep in to this. I noticed that I started to write a 200 pages long book about reactions on crises… So just a few notes on this subject;
This is something that can occur initially when a diagnosis is made or it can occur later on. Often denials can be a result from not be given enough of information. It can also be a result of the fact that you might never experienced something similar before and therefor not know how to react.
If a family ends om denying the diagnosis it’s important that the persons are given more information. A lack of information is always a risk of developing a denying attitude. This leads to the diagnosed one is given a heavier burden. It’s very hard having symptoms and a diagnosis when you’re not fully believed of your loved ones. Or the ill one is knowing a diagnose but your family is denying it. Summary: if you, as family, don’t have all the facts about the diagnosis and what’s expected to happen now it’s easy that you deny the illness and its symptoms your family member have got.
This can be changed! Setting up a new doctors appointment or an appointment for the family with a nurse specialized in the diagnosis. Either with or without the one carrying the diagnosis. If the concerned family is in shock when the information about the diagnosis is given it’s possible that the shocked one doesn’t understand the information. And not having the information can lead to denial. That’s why it is important that the clinic of that specific diagnosis follows up the diagnosed one and its family.
As we all know the follow up isn’t always possible due to the lack of doctors and nurses and them having too many patients to look after. Especially during this time of covid this is the reality. Therefore it’s important that the diagnosed one or other family members look after each other and looks for behavior of denial. You can always call your reception and tell them about this problem and ask how they think you need to act.
This burden of having family in denial, that hasn’t understood the information, isn’t a burden the diagnosed one needs but for many this is the reality. I know.
Maybe the future after a diagnosis can seem hopeless and the family can feel helpless. And this is a feeling that can occur initially or it can be felt during the years when the illness is there. Due to worsened symptoms or when it gets understood that this illness is chronic. If, during the crises, feelings of anxiety, confusion and fear isn’t met with understanding or information it can lead to the feelings of hopelessness or helplessness.
The feeling of helplessness can result in the family member withdraws from the diagnosed person. That is why it’s important to meet the familys feelings during the crises and be helped thru those feelings. That the families gets tools how to manage those feelings in a good way.
If possible, notice feelings of anxiety, confusion or fear within you and talk to your family members so they can help you turn to right persons to get help or information. If you acknowledge these feelings ask for help! Is it clear information you need, a therapist or is it support in finding coping strategies you need? Many associations have information to help families of a chronically ill. I found this pamphlet browsing the webb that have lots of information for you.
From the view of having a chronic illness myself and going thru a lot of therapy; it is the family of the ill person own responsibility to look for the help they need.
From the view of reality I know that the families aren’t able to see they selves that they’re not feeling well, their understanding of the illness and the symptoms that follows aren’t there.
As I mentioned before, it’s crucial that also the significant others gets the help they need.
You can’t get rid of the pain you, as being family to someone with chronic illness, are feeling. But having someone who’s not afraid to stand there by your side when all thoughts, feelings and emotions spills out from you is a really important. To help you thru the crises.
Not all of us, or rather – many of us – don’t have a friend or a spouse to express all their emotions and thoughts to.
In many cases there can be family members or friends that you can talk to, that are willing to stand by your side in this rough time. But you don’t want to ‘bother them’ with your feelings or you want to appear to be a strong person who finds solutions and adaptations that takes you through everything. Especially if it is your spouse, child or parent who gets sick you may feel the need to be the strong one.
I know, we are many who are sick who takes the role of being the strong one, but this post are to all who has the role of being family to a sick significant other.
I can tell you, from my own experience, that it’s impossible to keep up that fasade forever. Sooner or later there’ll likely be a collapse for you. But please remember; for us, we who’s got this chronic illness, it is really, really important to us that our significant others are feeling well! You want be able to help us if you’re not feeling well.
Actually I just found a really short text that included the basics when it comes to being a spouse of someone with MS from Very Well Health. Really recommend you reading it.
On the Swedish Neuro association homepage they also points out the need of offering therapist to those who live with someone with a neurological illness. That the families should know where to turn if in need of some sort of homeware. Also that the families of the ill person gets time for doing what they love. As I said before; if the families of someone with an illness don’t take care of them selves they won’t bee able to support the ill. You, as family to someone ill, need have respect for your own, as for the ill ones, mourning reaction. (If that’s a way of putting it in english…) I know that families to someone with cancer should be given the same abilities too.
I know that these tips are easier said than done, but talk about this with your spouse and extended family and friends and your boss. Together you may find a solution. It’s so easy that you, as a spouse, feel alone and get bitter over your situation. Remember: there is help out there. In some sort of way.
As a spouse of someone with chronic illness you can always call the clinic that takes care of your spouses illness and ask if they have advices or other sorts of help for you!!!
Being child or a parent to someone with MS or other chronic disease
In Sweden many hospitals are able to offer support with and to children of someone with a chronic disease thru therapist specialist in children. I know I brought my kids to my MS-nurse so she could explain to them about MS. Somehow the fact that me myself was a nurse didn’t mean a thing to my kids… But it’s like that when it comes to all illnesses; from a running nose to a pimple – If mama says it’s a cold or if she says it’s a pimple it doesn’t matter. They needs to hear it from someone else… Just for me to accept that it’s how it is 😀
Parents to children or teens are most of the times there when their children gets the diagnosis. But they are, if handled correct by the healthcare, offered a therapist when needed.
Being a child or a parent are difficult roles! When it comes to the children of someone with a chronic illness you can’t just say “it’s up to the children to get help when needed”. Even if you’re the one who’s ill you are still the one who’s responsible for the kids, but if you have a partner they should help you out with the observations of your kids feelings or emotions.
I’m sorry to say that but if you need help of how to support someone with a chronic illness or your own emotions – it’s your responsibility to get help. I can’t speak for all persons with a chronic illness, but for me, what I wish of my friends and extended family is that they talk with me if they have any questions or thoughts about my illness or how I wish to be treated. What I can and cannot do. Etc.
My primary target for this post are you who lives together with someone with a chronic illness, a parent, child, spouse partner. Or maybe you are a grandparent, a friend, a neighbor or a co-worker with someone who is ill.
WHY? Well, seen from my point of view, who is a chronic ill person, it’s important that the ones around me are getting the support they need. It is your responsibility to take care of your health (unless you are a child or youth). If I, as an ill person, don’t feel that your physical or mentally in a good state, how can I take care of myself so I can be around you for as long as possible? I will have to do more than I can because my children/parent/spouses/partners who aren’t feeling well enough to take care of what I’m not able to take care about. And the more time I need to put energy into getting the food finished, the floors scrubbed, noses cleaned and litterboxes emptied the less energy I will have to be the mother/child/spouse/partner I wish I could be. And you would want to be.
What I wish to say is that if you don’t take care of your wellbeing, how will you be able to do those chores that your child/mother/spouse/partner need you to take care of. Or being the support they needs of you?
There needs to be a teamwork in a family where someone has a chronic illness. The ill ones makes sure he or she feels as good as possible and does what he/she are able to. You need to make sure that you feel as good as possible. Then you can figure out together what now and the future will look like in your family.
As a friend or extended family you also make sure that you feel as good as possible. I think other chronic ill feel the way I do:
I don’t want people around me, wether if it’s my close family, extended family or my other loved ones, to feel down/depressed or drained because of me.
If you are a bot, don’t bother to put comments into my box. Otherwise I love to hear from you! I know, there are a lot of aspects that I haven’t mentioned.
To the next time…
Nationellt cancercentrum. https://cancercentrum.se/samverkan/patient-och-narstaende/narstaendestod/vagledning-for-narstaende/ Hämtat 2021-01-26
Neuro. https://neuro.se/media/1247/att-leva-som-narstaende.pdf Hämtat 2021-01-26.
Dyregrov, A. Katastrofpsykologi. 2:a upplagan. Studentlitteratur, 2002.
Janoff-Bulman, R. Shattered assumptions: Towards a new psychology of trauma. New York, Free Press, 1992.
Hannu Rantanen, The research project ‘Developing a crisis scorecard’ leading to these results has received funding from the European Community’s Seventh Framework Program (FP7/2007- 2013) under grant agreement n° 217889.